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PFDD Transcript LisaJ.Pieretti

GoodMorning!WelcometoourLandmarkPublicMeetingforPatientFocusedDrugDevelopmentonHyperhidrosis.I’mnotapublicspeakerprofessionallysoyou’llhavetoforgivemeforreadingwhatIwanttosaytodaybecauseIdon’twanttomissanything.IamLisaJ.Pieretti,theExecutiveDirectorandoneoftheco-foundersoftheInternationalHyperhidrosisSociety.Ihavebeenatthispostfornearly15years.Duringthose15years,I’vegottentoknowsomanybrave,determinedandbeautifulpeopleandI’malreadygettingteary-eyed.

OneshiningexampleisCaryn.Sheisarenownedflautist,whohappenstohaveseverehyperhidrosis.But,shehasanevenstrongerwilltocreate,andshewilltellyouherstorylater.But,fornow,Iwantyoutoknowthatthemusicyou’vebeenlisteningtoallmorninghasbeenhers.Sopleasejoinmeinthankingherforherartfulcontribution.

Iamblessedtoknownearlyallofyouinthisroom,andmanyofyouforoveradecade.And,it’sbeenthroughmanyoflife’smajormoments.IhaveknownAngelabeforeshehadchildren.And,manyofyouhaveknownmebeforeIwasmarried.Todayisanotheroneofthosemajormomentsthatwewillshare.And,Ithankeachandeveryoneofyoufromthebottomandtopofmyheartforbeinghere.

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Youhaveeachbeengiftedwiththisstonetocommemoratethisday.Youmaywonderwhatthesignificanceis.It’saweightwhenheldbyoneperson,butabuildwhenwealljoin.It’sthroughcollectionandcollaborationthatwetransformfromburdentobuild.Ihopethateverytimeyouseethislittlestone,whetheritbeonyournightstand,yourdesk,yourbookshelforinyourdraweroftreasures,youthinkbackontoday.Andyouthinkforwardtothewaywecanbuildabetterfutureforthepeopleinourhyperhidrosiscommunity.Ihopethatyourememberthisdayasoneofinspirationandtransformation.And,thestartandtheartofsomethinggreat.Nowlet’sgetstarted.

HopefullyI’llgetmyacttogetherinaminute.Let’stalkaboutsomegroundrules.Taketimenowtoputallcellphonesonsilentorvibrate.Weencourageallpersonallyaffectedhyperhidrosisexpertsandadvocatestocontributetothedialogue.Maybeyou’vealreadyfiguredoutthateveryoneherewithhyperhidrosisisanexpertinhyperhidrosis.They’remorethanapatient,they’remorethanasufferer.They’reanexperttodayinhyperhidrosis,andthat’swhowearelisteningtotoday.Anyonewhospeaksfromtheaudienceshouldstand,statetheirnameandoneadditionalthing,suchaswhenyourhyperhidrosisstarted.Discussiontodaywillfocusonhyperhidrosisimpacts,treatmentandresearch.And,we’repayingitforwardforthatlittleguy.OpenpubliccommentperiodisavailableuntilJanuary13,2018,twomonthsfromtoday.Keeponaddingyournarratives.Anyoneisallowedtospeakinopencomments,soallofus.Wewillcommentonhyperhidrosisrelatedtopics,somethatyou’veheardtoday.And,somethatyoufeelweneedtoaddtoit,andallarewelcometocontribute.

Rememberthisisaforumforconstructiveforward-thinkingconversationandinformationsharing.Pleaserefrainfromnegativecommentsdirectedatparticularindividualsorarealmofprofessionalsasawhole,eveninananonymousmanner.Theviewsexpressedtodayarepersonalopinions.TheFDAregulatorsareheretolistenandindustry/innovatorsareheretolearn.

Thiseventwillbelive-streamedandvideo-recorded.VideowillbeavailableonSweatHelp.org.Asmembersoftheaudience,youarepartofthisresource.Youwillnoticepollingdataasvisualaidsthroughoutthedaytoday.Thesepollsweretakeninadvanceofthemeeting,anddonotrepresentscientificdatanorwerethepollparticipantsarepresentativesample.Thepollsareforinformationalpurposesonlyasadiscussionaid,andarenotmeanttorepresenttheexperienceoftheentirehyperhidrosiscommunity.We’vecollectedthedatainadvanceofthemeetingbyemailingasurveytoallpatientrepresentativesandindividualswhothemselveshavehyperhidrosis.AndIhappenedtosendthatoutonHalloweennight.Iwasbusy,there’salotgoingon.And,in24hours,wereceived155completedresponses,andmanyofyouhereinthisroomcompletedthesurveyandsomeafterwecloseditbecausewehadtomakeourslidesandsaid‘Iwantmyvoiceheard.’Yourvoiceisheard.

Sofromahighlevelagenda,wewillhaveanoverviewoftheFDA’sPatientFocusedDrugDevelopmentinitiative,hyperhidrosisclinicaloverviewfrompublishedresearchandfromthepracticingphysician’sperspective.ThenwewillmovetoTopic1abouthyperhidrosisimpacts,andhaveashortbreak.And,itwillbeaveryshortbreakbecausewehavesomuchtogoover.Andthenhyperhidrosistreatmentsandresearch.Wewilltalkaboutthat.AndveryinspiringandfabulousremarksfromDr.Pariser.Sowehaveabout125in-personattendeesand350inwebcastrightnow.I’dliketointroducemyhyperhidrosisphysicianpanelistsandwelcomeyoutothestage.WewillhaveDr.DeeAnnaGlaserwiththeSaintLouisUniversitySchoolofMedicine’sDepartmentofDermatology,wheresheisinterimChairDirectoroftheDivisionofCosmeticandLaserSurgeryandDirectorofClinicalResearch.Dr.GlaserisalsoPresidentandco-founderoftheInternationalHyperhidrosisSociety.WehaveDr.DavidPariser,Secretaryandco-

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founderoftheInternationalHyperhidrosisSocietyandSeniorPhysicianatPariserDermatologySpecialists.Ican’thelpbutsmilewhenItalkabouttheseguys.Dr.PariserisaPastPresidentoftheAmericanAcademyofDermatology,andaProfessorintheDepartmentofDermatologyatEasternVirginiaMedicalSchool.They’reallmymentors.Dr.AdelaideHebertisapediatricdermatologistwithaheartofgoldattheUniversityofTexasHouston,wheresheisChiefofPediatricDermatologyintheMcGovernMedicalSchoolandChildren’sMemorialHermannHospital.Dr.Hebertisalsoaco-founderandboardmemberoftheInternationalHyperhidrosisSociety.Supportingusfromtheaudiencetoday,withtheirpatients,wearehonoredtohaveDr.RobertSidbury,DermatologyDivisionChiefforSeattleChildren’sHospitalandUniversityofWashingtonSchoolofMedicine,whereheisalsoProfessorintheDepartmentofPediatrics.Dr.ZakiyaRicefromEmory.WhereareyouDr.Rice?Hi.She’sfromEmoryUniversitySchoolofMedicine,wheresheisDirectoroftheDermatologyClinicalTrialsUnitandAssistantProfessorwiththeDepartmentofDermatologyandPediatrics.Additionally,sheisaTele-dermatologyStaffPhysician.Alldedicatedtohyperhidrosis.Youguysarechampions.AndnowpleasejoinmeinwelcomingDr.KendallMarcuswiththeUSFoodandDrugAdministration,wheresheisDirectoroftheDivisionofDermatologyandDentalProductsintheOfficeofDrugEvaluation.

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KendallMarcus,MD

GoodMorning!I’mreallylookingforwardtoallofthediscussionthismorning.Thisisthe4thPatientFocusedDrugDevelopmentthatI’vehadtheprivilegeofparticipatingin.IhavetotellyouthatIalwayslearnsomethingfromtheseevents.Itsreallybeenremarkabletomehowthesetypesofmeetingshaveexpandedmythinkingandmyunderstandingofdiseaseimpactsonpatientsandwhat’simportanttothepatients.Ijustbrieflywanttothankandacknowledgemycolleague,MeghanaChalasani,fromtheOfficeofStrategicPrograms.Meghana’sworkisreallyinvaluabletomebecausesheandhercolleaguesdoallofthistremendousamountofworkinsupportofthesetypesofmeetingsinorderthatIcanjustsortofshowupandlisten.And,Ijustwanttoacknowledgethemupfront.Includingmypresentationthismorning.ItoldMeghanawhatIwantedtosayandthethingsIwantedtofocusonandthetalklandedinmyemailinboxacoupleofweeksago.So,aspecialthankyouforthataswell.Iamhappytoseesomanypeopleheretoday.Patients,caregiversandadvocatesintheaudience.Inadditiontothoseonthewebcast.I’mreallyimpressedwiththewebturnoutandhaven’theardfromMeghana,butitcertainlyseemslikeitmightbearecord-breakerintermsofnumberofparticipantsinthistypeofmeetingthatI’veparticipatedin.Ijustalsowanttoacknowledgethatthere’srepresentationfromindustry,academiaandotherdrugdevelopmentstakeholdersaswell.IwantedtofocusinmytalkonprovidingyouallwithabriefoverviewofFDA’sroleinthedrugdevelopmentprocess.Ihavefoundthatsomepeopleunderstandourrolequitewell,butothershavemisperceptionsaboutourroleindrugdevelopment.AndsoIhavefoundthatprovidingpeoplewithabriefoverviewhelpstounderstandourrole,andishelpfulinallowingyoutoprovidefeedbackthatwillbemostusefultous.

ThefirstandmostimportantpieceofinformationthatIthinkisimportantforpeopletounderstandisthatdrugdevelopmentisinitiatedandcarriedoutbydrugcompanies,physiciansandotherentities.AndthoseareallindependentoftheFDA.Ourroleisreallytoregulatetheprocess,toensureprotectionofthepublichealth.Drugdevelopmentprocessreallybeginswithdrugdiscovery,andthatispartoftheprocessinwhichwehavenorole.Thenextstepbeforedrugsaregiventohumansforthefirsttimeiswhatwecallnon-clinicalworkthatisdoneinthelab.Thisisdoneinorderthatinformationcanbegatheredtosupportsubmissionofaninvestigationalnewdrugapplication,whichistheINDabbreviation.AndwelivebyouracronymsattheFDA.Oncethenon-clinicalinformationisgathered,ithelpsensurethatpeoplewhogetthedrugforthefirsttimeareprotectedintermsofsafety.Sooncethatinformationisgenerated,aninvestigationalnewdrugapplication,oranIND,issubmittedtoFDAinordertogetapprovalfromustogivedrugstohumansforthefirsttime.SoonceFDAreceivesthatinvestigationalnewdrugapplication,wereviewtheinformationanddeterminewhetherthatstudyissafetoproceed.Thesetypesofstudies,oncebegun,aregenerallydoneinhealthyvolunteersandthey’redoneatverylowdosesascomparedtothedosethatusuallymoveforwardastheproposeddoseformarketing.Inorderto,again,ensurethesafetyoftheparticipantsinclinicaltrials.And,it’salsodoneinlowdosesaswestarttounderstandhowthedrugsaremetabolizedinthebody,whatkindsofdruginteractionstheyhaveandwhetherfoodimpactshowadrugisabsorbedandthattypeofinformation.

AfterthecompletionofthePhase1study,thenextstageiswhatwecallPhase2.Duringthisphase,thereiscontinuedopportunityforinteractionandfeedbackfromtheFDA.And,thisincludestheendpointsthatareusedtodetermineifthedrughasactivityforthediseasethatisbeingtargeted.

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Thesetypesofstudiesaregenerallyconductedinvolunteerswiththediseaseofinterest.And,they’reusuallydoserangingstudies.Onesthataredesignedtodeterminetheoptimaldosethatmaximizesefficacywhileensuringsafetyofthesubjectswhoreceivethedose.OneoftheopportunitiesthatdrugdevelopershavetointeractwithFDAisattheendofthisphase.Whentheyhavesomeideaofthesafetyissuesthathaveoccurredwiththeproductandthedosethatismostlikelytooptimizeefficacywhileensuringsafetyofthepatients.Sooncethesestudiesaredone,anendofPhase2meetingisoftenheldandthepurposeofthismeetingistohaveinteractionsandcometowhatIwouldsayinitialagreementsaboutdesignandwhatwecallthepivotalPhase3trials.ThetrialsthataredesignedtorobustlydemonstrateefficacyasevaluatedbyendpointsthatareagreeduponbetweenthedrugsponsorandtheFDA.Aswellasthedesignofthestudytoensurethatefficacycanbeevaluatedwhilemaintainingsafetyprotectionsofthesubjects.Thesediscussionsincludepatientreportedoutcomesoroutcomesthatpatients,thatthedrugcompanies,andFDAhavedeterminedareimportanttopatients,andthathavebeenvalidatedinstudyofpatientsthroughoutthiswholeprocess.Phase3istypicallythelastphaseofthedrugdevelopmentprocess.Thesetrialsaregenerallyconductedusingtheto-bemarketedformulation,andevaluatetheproposeddoseformarketingoftheproduct.Althoughoccasionally2ormoredosesarebroughtintoPhase3.AnotheropportunityforfeedbackfromFDAoccurswhenthePhase3trialsarecompleted,andthesponsorshavetheoptiontomeetwiththeFDAtodiscussthecontentandformatoftheirfuturemarketingapplications.TheFDAprovidesfeedbackonsponsorsplansothattheapplicationcanbecompleteandreviewableatthetimethatitissubmittedtoensureasmoothandtimelyreviewprocess.OnceanapplicanthasgatheredallofthedatathattheyneededanddecidedoncontentandformatoftheirNDA,theycansubmitthemarketingapplicationtotheFDAforreviewandit’simportanttounderstandthatapplicantsdon’treceiveaninvitationfromtheFDAtosubmitanapplication.Rather,anapplicantchoosestosubmittheapplicationwhenevertheyfeelthattheyarereadytodoso.

TheFDAreviewofthemarketingapplicationhasmanystepsandalargereviewteam,andgenerallylastsbetween6and12monthsdependinguponthetypeoftheapplication.Substantialevidenceisdeterminedbyrecommendationsfromthereviewteam,whichthencontributestotheoverallbenefitriskdecisionbytheFDA.Thismeansthatthedecisionaboutwhetherthebenefitsofthedrugtotheintendedpatientpopulationoutweightheknownorpotentialrisksofthedruginthatpopulation.AndbenefitriskisreallythewaythatIliketolookatdrugimpactsonpatientsasopposedtosafetyandefficacy.Mostdrugsdohavesomeriskforadverseeventsassociatedwiththem,andtheyhavesomebenefittothepatients.Basedonthatbenefitriskassessmentmade,ofthatmarketingapplication,afinaldecisionismadebytheFDAtoeitherapprovethedrugformarketingintheUnitedStatesortoissueacompleteresponse,whichisnon-approvalthatcontainsthedeficienciestoberesolvedbytheapplicantbeforethedrugcanbeapproved.Fordrugproductsthatareapproved,developmentoftheproductcontinuesandinwhatwecallthePostApprovalorPostMarketingPeriod.InthePostApprovalStage,theFDAcontinuestomonitorsafetyinformationaboutthedrugfrommultiplesources,includingadverseeventreportsintheFDASentinelSystem.InthePostApprovalStage,sponsorswillconductstudiestofulfillpostmarketingrequirements.IftheFDAdeterminesthatthereareadditionalpiecesofinformationthatareneededbythecompany,butonesthatdon’tprecludeapprovaloftheproductformarketing,theymaycontinuetodevelopthedrugforotherindications.Forexample,sponsorsaregenerallyrequiredunderthePediatricResearchandEquityActtostudytheuseoftheirdruginchildrentogenerateinformationforlabelingthatwillguideprescriberswhotreatchildrenwiththediseaseofinterest.Thesepediatricstudiesareusuallynotdone,theysometimesare,butthey’reusuallynotdone

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untilaftersafetyinformationisgatheredinadults.Thispediatricdevelopmentusuallyoccursoncethedrugismarketedforadults.Oftenafterapprovalofadrugfortreatmentofonedisease,sponsorsmaychoosetoinvestigatetheirproducttotreatotherdisease,andthisalsousuallyoccursinthisperiod.

WheredothesePatientFocusedDrugDevelopmentmeetingsplayarole?AsImentioned,itisFDA’sresponsibilitytoensurethatthebenefitsofadrugoutweighitsrisk.Sohavingthiskindofdialogueisextremelyvaluableforusbecausehearingwhatyouallcareaboutcanhelpusleadthewayinfiguringouthowtobestfacilitatedrugdevelopmentforhyperhidrosisandunderstandhowthepatientsviewthebenefitandrisksoftreatmentforhyperhidrosis.We’relookingforwardtowhatwelearnedtoday,incorporatingwhatwe’velearnedtodayintotheagency’sthinkingandunderstandingofhowpatientsviewthebenefitsandrisksofhyperhidrosis.Onceagain,we’reallheretohearthepatientvoicesothankyouforyourparticipation.Wearetrulygratefulforallofyoubeingheretoday.AsI’vesaid,IhavelearnedinvaluableinformationforeveryoneofthemeetingsthatI’veparticipatedin,andI’mcertainthatIwilllearnimportantinformationtodayaswell.So,thankyouforinvitingme.Ilookforwardtothemeeting.

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DeeAnnaGlaser,MD

Allright,goodmorningeverybody.We’regoingtogetstartedwiththeprogramandIthankallofyouforbeinghere,forsharingyourtimewithus,forsharingyourstories.It’sreallymeantalot.So,mychargeisjusttogiveyoualittleoverviewaboutwhathyperhidrosisisandtheprevalenceofit.Thesearemydisclosures:

ResearchGrants Advisor/ConsultantAllergan Allergan Brickell DermiraDermira ForestResearchEvolus GaldermaGalderma MiramarMiramar UnileverUlthera President,InternationalHyperhidrosisSocietyI’veworkedwithmanyofthecompaniesthathavedevelopedtherapies.Allofyouinthisroom,Ithink,youcanrecognizethesepictures,youknowwhathyperhidrosisis,right?Buttherearesomedefinitionstohelpphysiciansbetterunderstandwhatisgoingonwiththeindividualpatient.Sowehavetorememberthatsweatglandsarealloverthebody.There’smillionsofthem.Theirnumbersdovarybydifferentsitesofthebody.Youcanseeinthepalmsandsoles,there’s700glands.Rememberthatthesweatingistheretohelpregulateourbodytemperatures.It’sanimportantphysiologicfunctionwhenithappenscorrectly.And,thesympatheticnervoussystemiswhatcontrolsthatsweatingtooccur,sothere’sasignalthatsays“we’rehot.”Thebrainsendssomethingdownthroughthesympatheticnervoussystemandtellstheeccrineglandstostarttosweat.Theseglandsaresituatedvery,verydeeplyintheskinrightwheretheskinandthefatmeet.Sothedefinitionorhowwethinkaboutprimaryhyperhidrosisisexcessivesweatingbeyondwhatisphysiologicallyrequiredofus.So,ifwe’reina100-degreetemperaturedayinthemiddleofSt.LouiswhereIamandit’shumid,I’msupposedtobesweating.That’snothyperhidrosis.But,ifI’minacoolcomfortableroomlikethisandI’mprofuselysweatingandthenIhavetheseothercharacteristics,whicharerelativelysymmetricalandbilateral.Usuallytheageofonsetforprimaryfocalhyperhidrosisisveryyoung.Oftentimes,inchildhoodoradolescence.Typicallybeforetheageof25.Mostpeoplewhohaveprimaryhyperhidrosisdon’tsweatfromthatbodysiteatnighttimewhenthey’reasleep.Theymaysweatiftheyhavetoomanycoverson.But,theydon’tsweatperhapsjustfromtheirunderarmsorfromtheirheadorwhateverbodysitetheymayhave.Manyofthemhaveapositivefamilyhistory.Manyofyouexpressedthatconcernyesterdaywhenyouweretalkingaboutwhatyouwereworriedabout.Areyougoingtopassthisontoyourchildren?Mostpeoplesweatatleastoneepisodeperweek.Usuallyit’smultipleepisodesinaday.Oftenaswe’regoingtohearmorefromtheotherphysiciansabouttheimpairmentandfromourpatientsheretoday,howitreallyaffectsyourdailyactivitiesandthat’sabigone.So,wedon’treallyunderstandexactlywhat’scausingthis.Weknowthatthereisaverystronggeneticcomponent.Weknowthatthesweatglandsareactuallynormal.They’renormalinsize,shape,thenumbersofthem.Weknowthatthesignaltothenervesandfromthenervestothesweatglandsisnormal.Thereisanormalamountofacetylcholine.There’sanormalamountofacetylcholinesterase.There’ssomethinggoingonthat’sprobablymoreinthebrainandprobablyinthehypothalamusthat’sdrivingthis.Buttheexactetiology,

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wedon’tknow.But,we’reusuallytargetingthesweatglandsorthenervoussystemaswe’redoingthat.Originallybackintheearly2000’s,there’sastudythatwaspublishedofabout1,500households,andwedeterminedthatthiswascommon.Soabout3%oftheUSpopulationseemedtohaveexcessivesweating.Buttheproblemwiththatstudywasitdidn’treallycorrelatewithwhatwasgoingonaroundtheworld.And,thenumbersweremuchhigherinotherpartsoftheworld.PattyWalker,whoisheretoday,didthisstudyof8,000individuals,andfoundthatreallytheprevalencewasmorearound5%.Not2.8%.Thatwasreallyinlinewithwhatwasdescribedintherestoftheworld.Ithinkwhat’ssodisappointingandwhat’ssoimportantonthisslideishowfewarethepeoplewhosufferfromhyperhidrosisareactuallybraveenoughtogoandtalktomedicalprofessionals.Andyoucanseeonly50%oftheindividuals,andthiswasjustacoupleofyearsago.Backintheearly2000’s,wefoundthatlessthan1/3ofthepeoplewhosufferedwithhyperhidrosishadeverdiscusseditwithanytypeofhealthcareprofessional.Butthenumber’sstillonlyat50%.So,we’relookingat5%ofthepopulation,whichisconsistentworldwide.WeknowthatintheUS,that’sover15millionindividualswhohavehyperhidrosis.Soforallofyouwhothoughtyouweretheonlyones,no,you’reoneof15millionintheUSandmany,manyworldwide.Butwhypeopledon’tgototheirphysicianorhealthcareprofessional?Becausetheyfeelliketherearen’tanytreatmentoptions,sowe’reheretohelpbreakdownthatbarriertoday.Andtheydidn’treallythinkthatitwasamedicalproblem.Ididn’tevenknowIshouldbethinkingthattherewouldbeatreatment.Sohereweareagain,theUSprevalencebackintheearlyon2.8%.But,wenowknowthatit’smorelike5%,andwhenyoulookattherestoftheworld,youcansee5%.12%inVancouver.12%inJapan.14%inChina.MorerecentlytheInternationalHyperhidrosisSocietyhelpedtodoasurverytofindoutinteenshowprevalentisit.Andsowelookedatteensfromages12-17.Wecappedourresponseatonly1,000.Wehadover980validatedresponses,andwhatwefoundisabout17%ofteensthoughtthattheyhadexcessiveuncontrollablesweating.It’saveryhighnumberandIthinkittookuswhat,fourminutes?Howmanyminutestogetathousand?Four.Fourminutestogetathousandresponses.Thesepeoplearereallydeterminedtohelpmakeusunderstandwhatthey’regoingthrough,andyou’regoingtohearmoreaboutit.So,theageofonsetagainabout1/3ofpeoplewerelessthan,or25%theonsetwaslessthan,10yearsofageabout45%fromaboutage11to13rightaroundwhenpubertyis.And,thenabout28%olderthanage14.WhatIthinkhasbeenreallytellingoverthelastseveralyearsI’vebeeninvolvedwithhyperhidrosis,isanunderstandingofhowmanydifferentbodysites.Wealwaysusedtojustthinkaboutunderarmsorhands,butwhatwe’relearningisthatpeoplearehavinguncontrollableunwantedexcessivesweatingfrommultiplebodysites.It’snotjusttheunderarmsandit’snotjustthehands,andyoucanseethatmanypeoplehavemultiplesitesofsweating.So,it’saxillary,palms,faces,scalps,groins,thelowerback,thebackofthelegs,theknees.Allkindsofareasandmany,manysites.So,IhopewhatI’veimpresseduponthosewhodon’tsufferfromit,butthosewhodoaswell,justhowcommonthisis.Itisanearlyonsetofage.Thisisgrabbingpeoplewhenthey’rejustgettingthroughchildhoodandadolescence.Atatimewheretheirself-esteemisreallybeingtested.Whenthey’retryingtobetteridentifywhotheyareandwhatthey’regoingtodointheirlife.Itspansanentirelifetime.So.itdoesnotgetbetterasyougetolder,I’msorrytosay.Itaffectspeopleintheir80’sandtheir90’sjustasitdoesintheirearlyteens.Westilldon’tknowexactlywhattheetiologyforthisconditionis,butwedohaveabetterunderstanding.Weknowthatitaffectsmultiplebodysitesandyou’regoingtohearmoreabouthowitimpactsallaspectsoftheindividual’slife.Canyouimaginewalkingaroundlikethis?Right.Yeah,thisisoneofmypatients.She’ssittingintheexamchairandshestoodupandImeanyouknowhowmiserablethisisallday.Thisishowshewalksaround.Shechangesherpantsmultipletimesbecauseshejustkeepsproducingsweatlikethis.Andwhenit’sreally

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important,shewearsanadultdiaperandshe’sonlyinher30’s.Sowiththat,IthankyouandI’mgoingtobringupDr.Pariser,whowilldiscussalittlebitmoreaboutresearch.

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DavidPariser,MD

ThanksDeeAnna,andagainletmeaddmythankstoallofyouwhoareheretakingthetimeouttodothis.I’mgoingtojustshowyousomedatathat’sbeenpublishedabouttheimpactofhyperhidrosis,butreallyeveryoneofyouhasastoryandeveryoneofyouisgoingtobedifferentfromeveryotherone.And,althoughwecanaggregatestatisticsforpurposesofstudyingtheproblemandofpopulationmanagement,it’severybody’sindividualstorythatcounts.

AsweheardfromDr.GlaserI,too,havebeenaninvestigatorconsultantforvirtuallyallthecompaniesthatmakeproductshavingtodowithhyperhidrosis.IdonothaveanyproprietaryinterestinanyoftheproductsthatIamgoingtodiscuss,andIwillbetalkingaboutoff-labelusesofdrugsanddevices.So,herearesomeofthequalityoflifeimpairmentsthatpeoplewithhyperhidrosisreport,andIamsurethatmanyofyoucancheckoffsomeoralloftheseandthisappliestoyourownindividualdailylife:shakinghands,clothingchanges.Youknowhowmanyofyoubuymultipleshirtstochangeinthemiddleofthedaysothatyourco-workersdon’tknowthatyou’rechanging.Writing,schoolkidswhogetdisciplinedbytheirteachersforsmearingtheirpaperworkbecausetheirhandsaresweating.I’vehadpeopleshortoutcomputers,computerkeyboards.Irritationandmacerationhappenstosomeareasofthebodywithhyperhidrosis.Butnotusuallyinfection.Ihadawomanwhodroppedherbaby,letalonedroppingglassobjects.Destroyingyourshoesandclothing,can’tknitanddootherthings.Musicalinstruments.Weheardaboutourflautist.IthinkthisisDr.Hebert’spictureofsomeone’sshoeswho’vegottentrashedbytheirsweat.

So,ifyoulookatsomeofthepublishedstudiesthatI’llshowyou.And,again,thepublishedstudiesaggregatethesepatientproblemsandcomplaints.But,again,it’stheindividualpeopleandtheirstoriesthatarebyfarformemoreimpactful.Butifyoulookatasurveyofpatientswhohaveexcessivesweating,thenumber1islessconfidence.Imadethecommenttosomebodylastnight.Yeah,wecanhelppeoplesweatless.Almosteverybodycanbehelpedsometosweatless,butwhatwereallydoiswegiveyouself-confidence.That’swhat’smoreimportant,really.And,allofthatleadstotheotherthingsontheslide,theirunhappiness,depression,leisureactivities,frustrationwithdailyactivities,notbeingabletodothethingsthatyouwanttodo.So,thereareanumberofpublishedstudies,andI’mgoingtogothroughthesequickly.Thesearejustaskingpatientssomespecificquestions.Haveyoubeenemotionallydamagedorinjured?Significantlyormoderately,73%.Areyoulimitedwhenyoumeetpeopleforthefirsttime?Youcanlookatthenumbers,they’reallmorethanhalfofthepatientsrespondtoeachoneofthesequestions.Limitedindevelopingpersonalrelationships,limitedwhenshakinghands,limitedwithbeinginpublicplaces(exceptmaybeheretoday).Limitedatwork,preventedaparticularcareerpath.That’sacommonone.Peoplewhowerejustnotabletodowhattheywanttodo.Ihadawomanwhowantedtobeanurse,butthere’snowayshecouldeverwearthosebluescrubsbecausethesweatshowsupontheblue.Again,herlifewaschangedbygettinghersweatingundercontrolsothatshecouldwearthebluescrubs.Effectivenessatwork,anditgoesonandon.Confidence.That’sthebigone.Feelinglessconfident,unhappiness,depression,changeofleisureactivitiesanditgoesonandon.Ijustwanttoreviewveryquicklyforyousomeofthepalletoftreatmentsthatwehaveforhyperhidrosis.Youallrecognizemanyofthese.Andthenlateroninthemorning,I’mgoingtotalkalittlebitaboutsomeofthedeficienciesinthetreatmentsthatwehaveandwhatwemightbeabletodotohelpimprovethat.

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So,everybodyusestopicalpreparations,topicalantiperspirants.Manyofyou,particularlyifyouhavepalmarorplantar,haveprobablytriediontophoresis.There’ssystemicmedicationsoff-label.There’snosystemicmedicationthatisindicatedfortreatmentofhyperhidrosis,byitslabel.Butwedofrequentlyusesystemicmedicationsoff-labelforthis.There’ssomeminimallyinvasivetreatments.Botulinumtoxininjections,veryeffectiveforlocalizedareas.Microwavethermolysisisadevicethat’susedandFDAclearedforaxillaryhyperhidrosisonly.Therearesomesurgicaltreatments.Manyofwhicharenotdonesomuchanymore.Particularlythelocalsurgeries,andI’lltalkalittlebitaboutETSsurgery.So,IalwaysaskthisquestionwhenItalkaboutthis.And,Iaskthistogroupsofdoctors.AndIsay,“Sohowmanyofyougotupthismorning,tookashower,andputonanantiperspirant?”Nobodyintheroomdidthat?Ok,“Howmanyofyouputyourantiperspirantonlastnightbeforeyouwenttobed?”Ok,sothoseofyouknowhowtodothis.And,I’lltellyouwhyinaminute.Antiperspirantsworkbestwhenthey’reappliedtodryskin.Andthoseofyouwhohaveaxillaryhyperhidrosis,probablyfindthatyousweatlessatnightthanyoudoduringtheday.Soyouwanttoputyourantiperspirantonatnight.That’strueofanybodywhoeverwantstouseanyantiperspirant.Antiperspirantsworkthroughachemicalreactionthatphysicallyplugssweatglands,andyoudon’twashthatoutinthemorning.Sopeoplesay,“Well,I’mgoingtogetupinthemorningandshower,I’mgoingtowashitoff,it’snotgonnaworkwell.”Itisgoingtowork,it’llcontinuetowork.And,ifyouwanttodosomethingforgoodgrooming,whatyoushoulddointhemorningisputonadeodorantasopposedtoanantiperspirant.Thedeodoranthasnoactiveingredients,anditwillmakeyoufeelclean.That’sthebestwaytouseantiperspirants.

Therearesomenewtopicalagentsonthehorizon,andaftermanyyearsofnothingnewinthehyperhidrosisworld,thereareseveralthingswhichmaybeavailable,maybeavailableinthenextcoupleofyears.Glycopyronniumtocylatewipeswillbethefirstthingprobably,wehope.Sometimesoonisasoftperoniumbromide.Thesearetopicalpreparationsthatinvolvetopicaluseofanticholinergics.Weuseoralanticholinergicsoff-label.Topicalhasabetterchanceofproducingagoodlocaleffectwithoutthesystemicproblemsofdryness,drymouthandotherproblemswithoralanticholinergics.

Iontophoresis,averyeffectivetreatmentifyoucandoit.Thereareseveraliontophoresissystemsavailable,clearedintheUSandinotherpartsoftheworld.Basically,whatitamountstoisputtingyourhandsandfeetintraysofwater,plaintapwateroutofthesink.And,anelectriccurrentispassedthroughthewater,whichtendstoI’dsay,it’snotreallytruebutIsay,short-circuitthesweatglands.Itdoesn’treallydothat,butitisavalidmethodformanypeoplewhohavepalmarandplantarwhocanstickwiththis.Becauseyoureallyhavetodoitfor20minutes3timesaweek,andit’shardtodothatforsomepeopletoblendthatintotheirdailylife.Wedon’treallyknowhowitworks,butitprobablyplugssweatglandsthesamewaythattheantiperspirantdoesbyiondeposition.

Justabriefwordaboutsystemicmedsfortreatmentofhyperhidrosis.There’snothingFDAapprovedforthis.Butweuseitcommonly,soourexperienceisbasedonverysmallpublishedcasereports,andpersonalexperience.Wegenerallywillusesystemicmedicationsforwidespreadhyperhidrosis,multipleareasorinareaswhereothertreatmentshavenotworkedaswell.And,themainmedicationsthatareusedareanticholinergics.Theproblemisit’shardtofindadoseofanticholinergicdrugthatwillproduceenoughsweatreductionwithoutthesideeffectsthatyouseelistedthere.Predominatelydrymouth.Sowestartofflowdoses,wegoupslowly,wetrytofindadosewherethere’senoughreductionofsweatingwhereit’seffectiveenoughthatdoesn’tleaveyoufeelinglikeyou’rewalking

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aroundwithaballofcottoninyourmouthallday,oratnightyourlipssticktogether.Thesearethepeoplethatwemightwanttoormightnotwanttouseoralanticholinergicson.Youneedtosweatandifyou’reahighschoolfootballplayer,you’renotgoingtotellthecoachthatyouneedtositdown.Youcouldenduphavingheatstrokeifyou’renotsweatingcorrectly,soit’snotforeveryone.Notforoutdoorworkers,notforathletes.Theslidetheresays“thinktwiceinchildren.”Dr.Hebertwilltalkalittlebitmoreaboutchildren,butwedofeelcomfortableaboutgivingoralanticholinergicsinsomedosesforchildren.Thereisaparticularanticholinergic,glycopyrrolate,thatisapprovedinchildren.Notforhyperhidrosis,butfordrooling.And,so,wedohavesomesafetydataandfeelalittlecomfortableaboutthat.

Microwavethermolysisisadevicetreatmentthat’susedtotreatunderarms,andonlyunderarms.Itdoesproduceapermanentreliefofsweating.Itdoesdestroythesweatglands.Itdoesn’tdestroy100%.And,Itellpeoplerealisticallyifyouhavethisproceduredonetoexpectaftertwotreatments,80%improvementthatglandsdonotregenerateaftermicrowavethermolysis.And,ithurtsabit,itsdoneunderlocalanesthesia,there’ssomeswellingandnumbnessaroundthesitesbutthatalmostalwaysgoesaway.

So,theinjectionsofbotulinumtoxinisreallythehomerunfortreatmentofanyindividualareaofhyperhidrosis.NowalthoughitisonlyFDAapprovedfortheaxilla,thatdoesn’tmeanitdoesn’tworkintheotherareas.Itcertainlydoes,andweuseitquitecommonlyinotherareas.Thereareanumberofbotulinumtoxinsthatareoutthereonthemarketthatareusedmostlyforcosmeticandforneurologicalindications.Theonlyonethat’sbeenstudiedandapprovedforhyperhidrosisistheBotoxbrand.Itworkswell,youcanalmostalwaysgetanarea,alocalizedarea,drywithBotox.Youcandofeet,itsusuallydonetodohands.That’sthemostcommonareawhichwe’lldo,butyoucanalsodothefeet.

Timeisrunninglow,soI’mgoingtoskipontosympathectomy.Basically,mymessageaboutsympathectomyisforpalmarhyperhidrosis,itworksgreat.Itdoesn’tworksowell(50/50)foraxillary,buttheproblemisnottheeffect,it’stheside-effect.It’sthecompensatoryhyperhidrosisthatoccursinupto80%ofthepatients,whichmeansyoustartsweatingevenmoresomewhereelse.Ihadapatientwhohaditdone,awomanwhosehandsweresodrythatshehadtousehandcreamallthetime.Butfromhernipplelinetohergroin,shewouldsweatsomuchthatshewouldwetat-shirtinafewminutes.Anotheronewhostartedsweatingonherbuttockssothatshehadtowearadiaper,orshewouldleaveasweatpuddleinthechair.Sothoseareanoverviewofthetreatmentsofhyperhidrosis,andIhopewehavegivenyoualittlebitoforganizationofthefactsonqualityoflife,whichyouallknowaboutprobablybetterthananyoneelse.AndIthankyouforyourattention.Dr.Hebertisgoingtointroduceustosomespecialconsiderationsforchildren.

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Dr.AdelaideHebert

Thankyou,David.I’mDr.AdelaideHebert,andI’mhappytobeheretodayandIspeakonbehalfofallthepatientsintheroom,theInternationalHyperhidrosisSociety,andmytwocolleaguesinpediatricdermatology,Dr.RiceandDr.Sidbury,herewithustoday.I’mreallygladIhavetheopportunityasthepediatricdermatologisttospeakbecauseIfeelthatthisisaconditionthatsooftenstartsearly.Dr.Glaserhaseludedtothat,andIthinkthatitreallydoesaffectchildrenanditimpactsasyougoforwardinlifeyourself-confidenceasDr.Pariserhaseludedto.Anditisatremendousburdenfortheseyoungpatientsastheygothroughlifetocarryforwardwiththisexcesssweating.Whatarethespecialconsiderationsthatwemusttakeintoaccountifwemanagechildrenwithhyperhidrosis?Wellwe’vetalkedabouttheageofonset,itisearly.10years.Ihavekidsmuchyoungerthanthat,andI’llillustratesomeofthoseforyou.AndIknowassomeofthepatientsspeakthisafternoon,they’lltelltheirstoriesofwhatimpactedthemduringtheirearlyyearsoflife.

Theanatomicdistributionofsweatingcanoftenbedifferentinchildren.Wemostoftenseepalmarsweating,butI’llillustratesomechildrenwhohavesweatinginmultipleanatomicareas.And,ofcourse,mycolleagueshaveeludedtothefactthatwecanfindsweatinginmultiplesiteswhenwebegintoaskandwebegintohavethosepatientsdiscussthiswithus.Wedon’thaveanyFDAapprovedtreatments,especiallyinchildren.Botox,foraxillaryhyperhidrosis,isapprovedfor18andabove.Butwedon’treallyhaveproductsthathavethatcoverageforchildren,whichmakesitverychallenging.Wehavedoneastudyonit,it’spublished.Butagain,noFDAapproval.EducationisachallengewhenItalktomymedicalstudents,andmedicalstudentsfromacrosstheUSrotatewithus.Mostmedicalstudentsnevergetalectureonhyperhidrosis,sowhenyou’vegonetothosephysicianswhohaven’treallyperhapsseemedsupportiveorsympathetic,theymaynothavebeenadequatelyeducatedonthistopic.We,atmymedicalschool,haveverylimitednumberoflecturesindermatologyandthat’sitsownchallenge.

Dr.Pariserhaseludedtothechallengesintheathleticandartarenawherekidsareespeciallytroubledwhentheycan’tkeepupwiththeirpeersorfeelchallengesuniquethattheythinkisonlyhappeningtothem.Socialinteractions,very,verymeaningfulinchildhood.Selfconfidencecan’tbeemphasizedenough.Wereallydorestoreself-confidenceasthepatientscomeintoseeus.AndIagreewithDr.Pariserthatmaybeoneofthemajorrolesweplayistheirphysicianinourhyperhidrosisclinicsandthenlifedecisionsanddirection.Thisisalittlegirl5yearsofage,whocamealongwaytoseemeinHouston.Andherchallengeis,hermothertoldme,wasnobodywouldplayRingAroundtheRosiewithherinkindergarten.Whatawaytostartyourschoollife.And,whenshehadcrossedthestreetandholdhands,nooneinherclasswouldholdherhand.Notonlywashersafetycompromised,butthinkofherself-confidencestartingatthisage.So,veryearlybeginningandverychallengingforthisyoungpatient.Thisisatell-talesigntheymaynotcomeinandsaytheyhavehyperhidrosis.ButwhenIseeyoungkidscomeinandthey’realreadywipingtheirhandsattheirsides,that’swhenIstarttheconversationthatmaybethey’rethereforatotallydifferentcondition.Awart,acne,asplinterintheirfinger,somethingelse.ButthisisasignthatIlookfor,andIbeginthediscussionwiththeparents.Thislittleonecameinbecauseofthinninghair,butlookatthesweatingonthetopofthehead.Noteverychildwhosweatsonthetopoftheheadmeansthatthey’llgoontohavehyperhidrosis.But,indeed,thischilddidcontinue.Thischildwasabout18monthsofage.Hyperhidrosiswasn’tevenonthewave

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lengthfortheparents.But,tome,thatwasgoingtobethemorelong-lastingchallengecomparedtothethinhairatthisstage.So,theconversationwasbegun.

ThesearesomepatientsIthinkthatareverytraumaticthatcomeintomyhyperhidrosisclinicwhereIseechildrenandadults.Ageisnotabarrierhere,it’sallcomersandasmycolleagueshavedescribed,howdoyougothroughlifewhenyouhavethisbarrier?AndIknowaspatientshereintheroomyouunderstandthisandyouoftenthinkyou’retheonlyone.Butwhodoyoutalkto?Wheredoyoubegin?Manyofthepatientsareverygratefultofindthatahyperhidrosisclinicevenexists.Herewasayoungsterthatcameinforsomeunrelatedproblem.Butashewaitedformetoevaluatehim,andhishandswereonthemayostand,lookwhatoccurred.TheyoftenfindmearatherfunnyphysicianthatIactuallywanttotakeapictureofthis.ButIthinkit’sveryimpactfulhere,thepicturetellingathousandwordsandindeedtheycan’tjustmakethisup.Thisiswhattheydealwitheverysingleday.Here’sanotherpatientsweatingheavilyfromthefeet.Agreatchallengeinwearingshoesorevenfindingfootwearthatwillsustaintheirabilitytowalkcomfortably.ThiswasayoungladywhocameinfromtheHoustonarea,thiswastheonlykindofshoesshecouldweartoattendschool.Noticethatthey’reventilated,she’slikealittlesweatboxtheretheyhavelittleholesinthisplasticfootwear.Again,theonlyshoethatwouldallowhertoattendherschool.Weknowthatwehavesomeverylimitedtreatmentoptions.They’reevenmorelimitedinchildrenthaninadults.Idouseoralanticholinergics,again,off-labelforchildrenbecauseitdoesallowthemtogotoschool.Andinasurveythatwepublishedinaposteratthepediatricdermatologymeetinganumberofyearsago,wefoundoutthatoralglycopyrrolatewasthesinglemostontimeprescriptionthatIwriteinanyofmyclinics.Notmedicineforacne,notmedicineforpsoriasis,buttheirregularmedicineforhyperhidrosis.Sowhenwechallengedthepatientsastowhythiswastrue,theydidn’twanttosweat,theydidn’twanttorunoutoftheirmedicine.Sotogetamedicinethatallowsteenagerstobecompliant,that’sremarkable.

Wedoknowthattheageofonsetcanbeearly,thishasbeeneludedtoandyoucanseethatearlychildhoodineachofthesethreestudiesover60%ofthepatientsreportedearlychildhoodinitiation.Andinpuberty,about30%uptoalmost40%.Then,manyat18yearsofageandolder,butagainaveryproblematicchallengeforchildhood.13yearsofage,wecanseethatmanyofthechildrenstartwithpalmarhyperhidrosis,averycommonpresentation.19yearsofage,manybeginwithaxillary.22years,manypatientsmayhaveaxillaryandpalmar,andperhapsoneotherlocationsowe’reawareofthis.Dr.Glasereludedtoastudythatwehadworkedonin2016.Wereallywantedtoknow,notjustfromthepatientsrepresentedbytheInternationalHyperhidrosisSociety,butpatientsgloballyacrosstheUStounderstandindeedwhatwastheimpactofhyperhidrosis.TheInternationalHyperhidrosisSocietywasactuallyfoundedin2003.Mycolleagues,whoaresomeofthefoundingmembersherewithme,realizedtheimpactthishashadbothineducationandopportunitygrantsresearchandreallyahomeforthosesuffererswithhyperhidrosis.Ithasbeensomeaningful.Wehavenotbeenpaidtoparticipateinthisgroupasphysicians.Wedoitbecausewethinkthereisauniqueneedandweneededaplatformtobeavailableandtobehelpfultoallofusintheroom.IthinkthishasbeenoneofthemostsuccessfulorganizationsinwhichIhaveparticipatedin,andIamverygratefultoLisaandallofhereffortsandthesupportwehavereceivedfromourcolleaguesandindustrytomakethisorganizationthesuccessthatithasbeen.

Whydoweinvestigatetheprevalenceofhyperhidrosisinchildrenandteens?Wereallywantedtohaveabetterunderstandingwhenhyperhidrosisbegan.Weknewthattherewasnotenoughdataupuntilthistimepointandwhatdatawasspecifictothosepatients12-17.About17.1%ofthepatientsinthe

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teenageyearsreportedhyperhidrosis.Dr.Glaserhaseludedtothis.And75%ofthatteenagepopulationwithhyperhidrosistoldusthattheyhadamajorormoderatedailyimpairment.So,again,startingatthemostformativeyearsoflife.Theseteenagersreallyhavetodealwithsomethingaboveandbeyondteenageangstandallthatgoeswithit.Mostoftheseteenssweatedfrom2ormoreareas,soit’snotjustasingleproblem.Anatomicallyforthem,it’smultipleareas.Theaverageareasthattheyrecordedwas5,sotheyreallyarehavinggreatimpactinmultiplesiteseachday.So,inconclusion,whatIwanttosharewithyouisthattherearealargenumberofteenswhosuffergreatly,haveamajorimpactontheirlifeatatimeinlifewheresomanythingsarealreadychallenging.And,theprevalenceisindeedmuchhigherthanweunderstood.Partoftheinitiationofthisparticulargrantandinvestigationandtheaverageageofonsetinourparticularstudywas11to12yearsofageintheUnitedStates.So,theimportanceoftreatment,thisisgoingtobeourgreatfocustodaybecauseweknowwedon’thaveenoughtreatment.Ifwehadtreatmentsthatwerewonderfulprobablyyouwouldn’tbehereattendingtodayaspatients.You’dbehomelivingyourlives.Butwemuststayfocusedonhowtobetterthestageforthosepatientswhosufferwithhyperhidrosisbecauseweknowthatthisfunctionalimpairment,thesocialimpairment,haslifelongimpactforeachofyou.

Ourtherapeuticoptions,ofcourseIhavedefiniteneedtoenhancetheseforthepediatricpopulationthatIserve.Currently,wehaveglycopyrrolateorRobinul.Wehaveoxybutynin,whichisoftenusedinpediatricpatientsforbladderissues.Andwehaveiontophoresis.And,weusealloftheseinourpatients.Werecognizethatperceptionbyparents,byteens,schoolandschoolattendeesandteachersvariesgreatlyinchildren.And,therehasnotbeennearlytheresearchthatweneedinpediatricpopulationstoadequatelyservethepatientswhocometousforadvice,guidanceandtherapy.Wewanttohaveengagementoftheentireteam,pediatricians,dermatologists,colleaguesacrossthespectrumandgoodcommunication,muchofwhichisaffordednowthroughtheInternationalHyperhidrosisSociety.Weknowthatmanyofthepatientswetreatwithglycopyrrolategettremendousimprovement.90%experiencedimprovementwithtwomilligramperkilogramperday.IappreciateandreflectbackonDr.Pariser’scommentsaboutourfootballplayers,orthosewhospendalotoftimeoutdoorsengagedinsportingactivities.Oursprinters,forexample,inthehotHoustonweathermaynotbetheidealpatienttotakethisastheyhavetocoolthemselveswithsweatinginordertoparticipatefullyinthesportingactivitiesthattheyenjoy.Sideeffectswehavethese,drymouthanddryeyes.Wetrytocompensateappropriatelyandallowthesechildrentoreducetheirsweateventhoughthesesideeffectscanbeproblematic.Weknowthat92%ofthosepatientswhotookglycopyrrolatedidimprove.And75%wouldrecommendittotheirfriends.Iknowthisiscertainlytrueinthepatientpopulation.And,I’vehadsomanypatientsinmyhyperhidrosisclinictellmethatglycopyrrolatehasbeentrulylife-changingforthem.Nowthelong-termuseofoxybutyninforpalmarandplantarhyperhidrosishasbeeninvestigatedbycolleaguesinpediatricdermatology.97patientswerelookedat,59ofthepatientswereages4to14yearswiththerapyformorethan6months,theyhada94%improvementinqualityoflifeandthey’reatabouta91%reductionintheirsweating.So,veryefficaciousoff-labeluseofoxybutynininthepediatricpopulation.Anticholinergicside-effects,ofcourse,wereexperiencedandweknowthatpatientsneedvaryingdosesdependingontheirage.Currently,wearenotrecommendingtheextendedreleaseformbecausewehavelesscontrolofthatdosingcurrently.Now,Idouseiontophoresisinthepediatricpatientswhocometomewhohavepalmarandplantarhyperhidrosis.And,especiallyforthedrug-resistantparentwhodoesn’twanttohavetheirchildonasystemicmedication.Wecanusethis.Wesometimesdroptheglycopyrrolateintotheiontophoresistray.Again,anoff-labeluse,butwecanproducegreatbenefit.

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LikeDr.Pariser,I’mnotabigfanofsurgeryinterventionforpatientswithhyperhidrosis.It’saveryexpensivetreatment.Itmaydolastingharmanditseemsthatchildrenmayundergomorecompensatoryhyperhidrosiseventhantheadultpopulation.Upto70%ofthosechildrenwhodoundergothoracicsympathectomy,70%havecompensatoryhyperhidrosis.And,manystatethattheywishtheyhadnothadthesurgeryatall.InSwedenwherethisparticularsurgicalprocedurewasfirstgivengreatpromiseandtheauthoritytobedone,it’snowbannedandIcitethatoften.Thiswasamomwhocameinwithherchild.Shehasdifferentsizepupilsbecauseshehadthoracicsympathectomyand,again,shestatedshewishedsheneverhaditdonebecauseofcompensatoryhyperhidrosis.Wehaveanumberofotherreviewsthatdealwithpediatrichyperhidrosispublishedbycolleaguesinpediatricdermatology,andIwanttogivethemfullcreditaswell.So,insummary,thepediatricpopulationcertainlywarrantscarefulattentionbecausethisconditionbeginsduringchildhood,andtheburdenofdiseasethatthesechildrencarryforwardwiththemissoimpactfulinmanyaspectsoftheirlife.We’dliketohaveon-labeltreatmentsasmanyinsurancecompaniesdeniedtochildrenmedicationsavailabletoouradultpatientssimplybecauseit’snotFDA-approved.Idealwiththatonadailybasisinmyclinic,andIbelievemypediatricdermatologycolleaguesintheroomwouldsupportthatfinding.Hyperhidrosisdoesbegininchildhood,thusithasalifelongimpactandcertainlywarrantsourfullattentionandallthehelpthatwecanbringtothispatientpopulation.Thankyou.

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LisaJ.Pieretti

Wonderful.I’msurealloftheexpertsintheroomareprobablysopsychedtohearphysiciansandsuchesteemedphysiciansunderstandingthestrugglesthattheygothrough.Mustfeelreallyvalidating,right?Iseesomeyes’s.So,I’dliketo,pleasejoinmeinawarmwelcometoAngelaBallard,whowillfacilitateourdiscussionwiththeexperthyperhidrosispanelistsaswellastheopenforumdialoguewithallofyouintheaudience.MostofyoualreadyknowAngela,andI’msureyouwillagreesheisaptlynamed.AngelahasbeenwithmeintheInternationalHyperhidrosisSocietysincewebeganin2003.Nearlyeveryblog,tweet,post,manuscript,page,agenda,slide,reference,poster,postcardandtutorialhasbeenauthoredbyher.Sheisanurse,achampion,ahumanitarian,aconservationalistandanathlete.Weareingoodhands.

AngelaBallard

Thankyousomuch.Iamsohonoredandprivilegedtobehere,andtohelpfacilitatethisdiscussion.SoIwouldliketoinviteourpanelistsforourfirsttopictopleasecomeup.Sothatwouldbe:Maria,Lucio,Christina,CarynandSachin.So,asyouguysmakeyourwayup,I’lljustgivealittleoverviewofwhatwe’regoingtodonow.Andthisisreallywhereyouguysarehyperhidrosisexpertsandtakethestagefigurativelyandliterally.We’regoingtobeginourdiscussionwithcommentsfromourpanel,andthepurposeistosetthecontextforabroaderdiscussionwithallofyou,ouraudience,whopersonallyexperiencehyperhidrosis.Thepanelistsreflectarangeofexperienceswithhyperhidrosisandsomeofyouwillfindthatyoursareverysimilarordifferentandwewanttohearaboutthesimilaritiesanddifferences.Afterwehearfromeachofouresteemedpanelists,wewillbroadenthedialoguetoincludeindividualsandfamilymembersfromtheaudience.Becausewewanttobuildontheseexperiencesandcreateabiggerpictureofwhat’sgoingon,we’regoingtoaskquestionsandinviteyoualltospeakandamicrophonewillbebroughttoyousodon’tworryaboutthat.Pleasestandandstateyournameandmaybeoneotherthingaboutyou.Maybewhenyourhyperhidrosisstartedorsomethingelseyou’dliketoshare.And,letmejustmakesureIcoveredeverything.So,whenwegettothediscussion,pleasetrytolimityourcommenttoaminuteortwoaswehavealottocovertoday,andalsowe’lltrytosticktothetopicat-hand.And,hopefully,we’llgettocoverallofthetopicsandcertainlyattheendifyouhavesomethingthatyoufeellikewetotallymissed,let’sbringthatup.Iwanttorecognizethattheseareverycomplexandseriousissuesformanypeoplewithhyperhidrosis.And,thereissupportavailableandIwouldliketomentiontheNationalSuicidePreventionHotlineandsuicidepreventionlifeline.organdwehavethatphonenumberavailableforanyoneneedingsupport.So,anotherroundofapplauseforourpanelistsplease.And,we’regoingtostartwithMariaandgoondowntheline.So,Maria…

Maria(Panelist)

MynameisMaria.I’m37yearsold.Sixyearsago,Ilaunchedmyblog,MyLifeasaPuddle.Butmystorybeginsin2ndgrade,theearliestIrememberhavinganexcessivesweatingproblem.Wipingmypalmsonmycatholicschooluniform,usingmysleevestohidethesweatdrippingfrommyfingertips,watchingtheedgescurluponthebigchieftabletonwhichIwaspracticingmycursivehandwritingwas

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asceneforthebooks.Neverwearingsandalsbecausemyfeetwouldslipandslidealloverthem.LookingaroundtoseeifotherkidshadsweatyfeetandavoidedthesametypesofshoesIdid.Rememberjellyshoes?Icouldonlywearminewithsocks.Andthatmademefeellikeadork.Ididn’twanttostandout.Ashumans,wearewiredforthetouch.Whathappenstouspsychologicallywhenwefeelunworthyofit?Hyperhidrosisisrootedinshamebecausewecan’tcontroloursweating.Wecomeupwithuniquewaystohideit.Sweatingmakesusfeeloutofcontrolandmanyofusturninwardtowrestlewithoursweatdemons.

Iwas36yearsoldbeforeIhadmyfirstpedicure.Mybestfrienddraggedmetothesalonandmademedoittogetoutofmycomfortzone.Whenthepersonmassagingmyfeetleanedovertograbthebottleofnailpolish,shegentlyrestedherhandonthetopofmyfoot.Ialmostcriedoversuchasimplegesturebecauseforallofthoseyears,IthoughtapedicurewassomethingIcouldneverdo.Iwasashamedtobetouchedandworriedthatthey’ddiscovermysecret.Inanefforttoclampdownonthenever-endingsweatcommentarythatrunsrampantinmyhead,Idevelopedafewlifehacksforthebiggestdayofmylife,mywedding.Iwasexcitedformybridaldebut,yetalsoanxiousthatI’druinmysatindress.Iworeboringwhiteballetflatswithno-showsocksbecauseIwasafraidI’dbreakanankleifIworeslipperyhigh-heeledshoes.Thisiswhypeoplewithhyperhidrosisfeelliketheycan’tbuyniceclothingandshoes.Wemayruinthemwithsweatstains,sowhyevenbother?Andwhataboutmyweddingbouquet?Aboutamonthbeforemybigday,Ispottedasurgicaltowelintheexamroomofmydoctor’soffice.Itjusthappenedtobetheexactcolorofmyweddingflowers.AsIsoakedthroughthepaperontheexamtableduringmyappointment,IbashfullyaskedmydoctorifIcouldhavethetowel.ThankGodformycraftymother-in-law.Shehand-seweditaroundthehandleofmybouquet.WhenIhandedittoofftomymanofhonortorecitemyvows,itwasstilldrenchedinsweat.Afewyearslater,manyofmyfriendswerehavingbabies.Drivingtothehospital,mypalmsgrippingthefabric-coveredsteeringwheel,ItriedtothinkofwaysIcouldhidemysweating.Whilestillbeingabletoholdthoselittlebundlesofjoy.IwasabsolutelypetrifiedthatIwouldgetthemsoakingwetor,worse,losemygripanddropthem.Myfriendsdidn’tcareaboutmysweat.TheyjustgavemeakitchentoweltoholdwhenIneededit.

Ihaveanauto-immunediseasecalledulcerativecolitis.LastyearoverEasterweekend,Iwasactuallyhospitalizedbecauseofit.WhenmydoctortoldmeIhadexhaustedallothertreatmentoptionsandwouldhavetoself-injectabiologicmedication.Myfirstthoughtwas‘howcanIstabaneedleintomyselfwithsweatyhands?’Ifmyhandsweretoslip,Icouldloseapreciousdoseofthislife-savingmedication.Sonotonlyishyperhidrosissocially,mentallyandemotionallydebilitating,it’sadownrightsafetyissueforme.

Earlierthisyear,Itriedontwoseparateoccasionstoqualifyforandenrollinaclinicaltrialforanunderarmtreatment.Wearingapaper-thingownthatwasdefinitelynotsweat-friendly,Iwasplacedinacoldexamroomfor30minutestoacclimate.Thenmyunderarmsweatwascollectedoncottonpadsandthenweighed.Thefirstnumberscamebackwithinrangebut,sadly,allofthetimesafterwardsdidnot.Thentheprotocolwaschanged,andIhadachancetore-qualify.NeverhaveIattemptedtowillmybodyintosweatingbefore,butinthatexamroomonthatday,Iwastryingmyhardest.Hyperhidrosisisnotconstant,itisepisodic.IguaranteethatIwouldqualifyforthisstudytodayifyouweretocomeuphereandmeasuremysweatyunderarmsrightnow.

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Weallwanttobeseentoknowthatwematter.Ittakesagreatdealofcouragetofacelifewithhyperhidrosis.Pleasedon’tbedisgustedwhenyoushakeourhand,insteadadmireusforhavingthecouragetodosoinwhatyoumayknowasadryworld.WhenanorganizationliketheInternationalHyperhidrosisSocietycomesalongandempowersus,suddenlydoorslikethismeetingthatweneverthoughtwecouldknockoninthefirstplace.TheInternationalHyperhidrosisSocietyopensdoorssothatwecangetagriponourfuture.Iaskyoutodaytopleasewalkthroughtheseopendoorstobringusbetterclinicaltrials,bettertreatmentoptions,andbetterlives.Whenitcomestodrugdevelopmentforhyperhidrosis,thinkofitthisway:TheInternationalHyperhidrosisSocietybuiltthecarandwe,asthepatients,arebuckledinandreadyforthejourney.Butitisyou,pharmaceuticalcompaniesandindustryinnovators,whoholdthekeystotakeuswhereweneedtogo.

AngelaBallard:Thankyousomuch,Maria.Lucio…

Lucio(Panelist)

MynameisLucio.I’m27.I’mfromNewYork.Umexcuseme,Ihavetoreadfromthenarrative.I’mnottoogoodatthispublicspeakingthingeither.I’vebeensufferingwithhyperhidrosis,morespecifically,palmarhyperhidrosisforwhatseemslikeaneternity.Iwouldhavesaidlivingwithhyperhidrosis.However,ithasbeennothingbutanincarcerationonmylife.Itissaidthathighschoolyearsaresupposedtobethebestyearsofyoureducationalcareer.Unfortunately,Iwouldhavetodisagree.ItwasthestartofhighschoolthatIrealizedIhadaproblemonmyhands,literally.Iwassoskepticalonwhymyhandswerealwayssosweatyfornoreason,soIspenthoursanddaysresearchingthesymptoms,causes,prognosisandtreatmentsofthiscondition.Alloftheinformationwasveryvague,andnomedicalprofessionalseemedtohavetrueknowledgeandexperienceonthiscondition.Ifeltdoomed.FromthemomentIwokeup,tothemomentIwenttosleep,Iwasconstantlytryingtodrymyhands.Iwouldcomparemysymptomstowashingyourhandsunderrunningwaterandnotdryingyourpalms.Thisbroughtmeextremeembarrassment.Beingateenager,shakinghandswithyourfriendswasagiven.Butseeingthepeopleyoushookhandswithwipetheirhandsaftershakingyourswasevenmoreembarrassing.Totopitoff,somepeoplewouldevenask,“Whyareyourhandssosweaty?”Ihadnoanswertogivethem.Noexplanationonwhymyhandswereprofuselysweatingandtheirswasnot.Thismademenotevenwanttogotoschool.IbeganavoidingpeoplealtogetherifIknewIhadtoshaketheirhand.Inadditiontoshakinghandsorgivinghighfives,itwasdifficultformetousetouchscreenelectronicsortaketests.Withmypalmsbeingsosweaty,thesesimpletaskswerenotsosimpleforme.Besidestheeverydayembarrassment,hyperhidrosishaspreventedmefromestablishingrelationshipswithwomenthatI’vehadinterestin.Furthermore,ithassabotagedrelationshipsthatIhavebeenin.MysignificantothersoftenthoughttheywerethereasonIdidn’twanttoholdtheirhandsortouchthem.However,theycouldnotunderstanditwasmyownself-consciousandfearofrejection.Bymysenioryearinhighschool,itwastimetodecidewhatcareerpathIwantedtotakeinlife.Infact,IbasedmanyjobchoicesonjobsthatIdidn’thavetoshakepeople’shands.Theconstantthoughtofhavingtoshakemyfutureemployer’shandafterinterviewsscaredmetothepointofskippingoutonapotentialjob.Ieventuallyfollowedmyheartandbeganacareerinthemedicalfield.Morespecifically,emergencymedicalservices.IstartedemploymentasanemergencymedicaltechnicianfortheFireDepartmentinNewYorkCity.Afewyearslater,afterastrenuouseducationalprogram,Iwaspromotedtoparamedic.Overtheyears,I’veacquiredtacticstocompletelyavoidshakinghandswithmyco-

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workersandsupervisors.However,eventhoughIwassuccessfulinmyavoidancetactics,Iwasunabletoavoidwearingmyprotectiveglovesforpatientcare.Wearingprotectiveglovesisthemostimportantwaytoensuremysafetyaswellasmypatient’s.Sobasedontheurgencyofthepatient’scondition,puttingongloveshastobeextremelyfast.TheeasiestwaytoexplainwhatIendureistoquicklytrytoplaceyourwethandsinsidelargelatexgloves.ItcanbenearlyimpossibleifyouhavenotimprovisedwaystoputthemonlikeIhave.AnothernuisanceIfacewithglovesishowtheyactasareservoirformyexcessivesweating.Afterashortduration,thesweatseepsoutfromtheglovecuffanddownmyarms.Thisfeelingisextremelyuncomfortable.Icouldn’tevenexplainhowIfeelwhenIseemypatientfollowthebeadsofsweattravellingdownmyarms.Inconclusion,Ifeelhyperhidrosisisoverlooked,under-treatedandpoorlymanaged.Notonlybyphysicians,butbypharmaceuticalcompanies.Speakingformyselfandmillionsofsufferersthathaven’thadthecourageoropportunitytospeakout,weallneedrealtreatment.Thisincludeseffective,safeandaccessiblecare.Thankyou.

AngelaBallard:Icanseemanypeopleintheaudiencearebeingreallyaffected,soIagainjustwanttothankyou,panelists,forallofyoursharingbecauseit’sclearlysoimportantforeveryone.And,justtomentionLuciohascreatedhisowniontophoresismachine,whichisprettyawesome.But,perhaps,alsoatestamenttothelengthsthatpeoplearehavingtogo.Christina,you’reupnext.Thankyousomuch.

Christina(Panelist)

I’mverysickandImayhavetheflu,butIneededtobehere.MynameisChristina,andI’mfromTennesseeandIhavehyperhidrosisonmyhandsandfeetandotherareas.Butthosearethemainpartsthatkindofhindermyday-to-daylife.AndIwanttokindofcreateanimagealotofpeoplekindoftellustodealwithitandthatit’snotarealproblem.ButIthinkthepeoplethatdon’thavetodealwithit,maybeiftheycouldjustimagineforasecond.Justimagineifit’sarainydayandyoustepintoapuddlemaybeyoujustgetwetandthenyougobackhomeandtakeashowerandyoudryoffanditnevergoesaway.You’reconstantlywetallofthetime,anditnevergoesaway.Forme,inthefifthgrade,Irememberputtingonlotionandthisis,IrememberexactlywhereIwasandwhatIwasdoing.Iputonlotionand,shortlyaftermyhandsstartedsweating.SoIthoughitwasthelotion.Ithoughtwhattypeoflotionisthisthatmakesmyhandssweat?Iwantedtosuethecompanyorsomething.But,dayslater,monthslater,yearslater,Irealizeditwasn’tthelotion.Itwassomethingthat’sgoingon.Itoldmyparentsaboutit,andtheytoldmetodealwithit.Theytoldmeitwasn’taproblem,soIdidn’tevengettogotoamedicalprofessionalandobviouslysomeofthemdon’tevenunderstandwhatwehavetodealwith.Thereisn’tmuchtreatment.Thetreatmentthatisoutthereistooexpensivetobeatemporaryfix.Andeverybodydoesn’thavethemoneytoeverysixmonthsgoandgetatreatment.SoIjustkindofjustdealtwithit.And,IwasaverysmartchildandmyteacherswouldtrytohighfivemeandIwouldhavetoawkwardlytrytofindwaysto,youknow,IbecameamastermanipulatorandIhadtofindwaystoavoidhandshakes.IfeellikeI’masocialperson,butIwasneverabletobecomewhoIambecauseIhadtolearntostayawayfrompeoplebecausepeoplewouldalwaysshootmedown.“Whyareyourhandssosweaty?”EvenwhenIwasatchurch,ithappenedtome.And,itwasaverytraumaticexperienceandso,IknowI’mnotreadingoffofthis.I’mkindofad-libbing.Butthethingsthatwehavetodealwith,wehavetochangeclothesmultipletimes.Justimaginegoingthroughlifethatway.Notbeingabletohaveagoodqualitylife,andIjustreallywanttoreclaimmylife,togetitbackandtoalsoallowotherpeoplewhoafterme,theyoungerkids,Ithinkthere’sababyherethathasit,fortheretobetreatmentforthemsotheydon’thavetogothroughlifethatwe’regoingthrough.Havingtopretendthateverythingisok,whenit’snot.We’regoingthroughthisbattle.We’rebattling

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everydayjusttodonormalthingsjusttotalktopeople,justtodonormalthingsandit’sareallyterribleexperience.ButIreallyhopethatyouworkdiligentlyandhardtohelpusbecausethisisaproblemthatwe’refacingintheworldandwewouldreallylikeforyoualltofightwithusandtohelpusovercomeandreclaimourlives.

AngelaBallard:Thankyousomuch,Christina.And,nowZeb…

Zebulon(Panelist)

Thankyou.Wow,Iguesswe’llcontinuetofeelthiswayaswekeepgoingtodaybecausethestoriesaresopowerful.MynameisZeb.I’macollegeprofessor.Iteachhistory,IteachAfricanAmericanhistoryatauniversity.Asyoucanprobablyimagine,somanyaccomplishedpeoplethatarepartofthisandI’vebeengettingsuchabroadsensefromtalkingtopeopleaboutthedifferentwaysthatwealldealwiththis.Mycase,sometimeswe’reinintimateenvironmentsworkingone-on-onewithstudents,Ithinkofcocktailpartiesorsometimesyoumayfindyourselfinaprettyniceenvironment.Alibrary,aworkinarchives.Asyoucanprobablyimagine,sweatingcanbeaproblem,you’reworkingwithdocuments,you’resortofinclosewithpeopleandyouknow,itcomesup.Peopleremarkonit.Peoplementionit.Ithinkthere’sthatoldsortofsensethatwhenyou’retalkingandyou’resweatingalot,sometimespeopledoubtwhatyou’resaying.“Areyoulying?”“Areyoumisrepresentingyourself?”And,whenyouworkinanareawhereknowledgeandtheacquiringofknowledgeandthesharingofknowledgeispartofwhatyoudo,thatcanbearealsortofproblemprofessionally.SoIhaveaxillaryhyperhidrosis,andt-shirtsovertheyearsjustthrowninthetrash.Nicesuitjacketsandthatkindofthing,someoneelsementioned.And,so,it’stough.Ididn’twritedownanarrativeexactly.Youcouldcallthissortofthoughtsonhyperhidrosis.Randomthoughts.Ithinkitseemstomethatwiththiskindofcondition,it’snotlife-threatening.Althoughinsomecases,aswe’vebeenhearing,itkindofcanbe.Dependingonwhatthesituationis.Ithinksometimeswhenyouhaveaconditionthatisnotasextremeasotherhealthconditions,it’shardtodramatizeit.It’shardtoexplainittopeopleandit’shardtogetpeopletorealizeandtotakeitseriously.IhadtodoaTEDtalk.Thatwasfun.Iwasalreadyterrified,myfirstTEDtalk.Whichwascool.It’snicetobeaskedtodoaTEDtalk.Butifyouknowyou’regoingtobeperspiringoncameraandthatkindofthing,it’sprettyterrifying.IshoulddoaTEDtalkonhyperhidrosis.That’sagoodidea.Ididn’tthinkofthat.Ijustsweatedthroughthewholething.That’skindofbeensomeofmyexperiences.Iwasalsothinking,sortofwritingupsomethoughts…Ialwaysnoticeontvorcommercials,movies,youdon’tseepeoplesweatinganymore.You’llneverseesomeoneinamoviewithsweatyunderarmsandthatkindofthing.Itseemstomelikebackintheday,justoldenoughtoremember,Iusedtowatchalotofreruns.You’dseethatintelevision,you’dseethatinmovies.Youdon’tseethatanymore,andthathasaneffect.It’ssortoflikecreateslikeastandard.It’slikethatfakeworldweseeontelevision.Thatbecomestheideal.Noonesweats,nooneiseveruncomfortablelooking,everyone’salwaysclean,andneatlookingandthatkindofthing.Wedon’tliveinthatworld.It’sverysuperficial,butitdoesseemtometohaveaneffect.Ialsothinkthatthere’sacultureofbullyingthatwe’reinthemidstof,anditaffectschildren.It’ssortofpartofthat,too.Asaprofessor,I’minfrontofmillennialseveryday.Justbecausethat’satthatage.Millennialscanbealittlebitharshsometimesonthings.Theyhavealittlebitofawayatlookingatthingsandsoitbecomesanissue.It’salittleembarrassing.Peopleareworriedlike,“Areyouhavingaheartattack?”“No,I’mok,Ijustsweatalot.”It’stough,itcanbetough,butagainlikeIsaidit’snottoughlikesomeotherthingsouttherethateveryoneagreesarejustreally,reallytragic.Thisismoreinthatgrayarea,andthatseemstomemakesithardertodowhatwe’realltryingtodorightnow,whichistounderstanditandtalkabout

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it.IfindmyselfbeingmuchmoreemotionaltodaythanIanticipated.Hearingthesestories,eventheclinicalresearchthatwaspresentedinthebeginning.It’sfactbased,you’renotsupposedtobefeelingemotionalfromfacts,butIdid.And,whatapowerfulpresentation,sotowrapupthat’sbeensortofmyexperience.Ilovetheconversationsthathavebeenhad,peopleaskedmethingslike,“Whendidthisstartforyou?”Ineverthoughtaboutthatforsomereason,likewhenitstartedforme.I’mrealizingitstartedaboutwhenIwasincollegeanditsoundslikethat’sconsistentwiththeresearch.Anyway,that’smystory,thankyouverymuch.

AngelaBallard:Thankyou,Zeb.Ithinkyourstudentsarereallyluckytohaveyou.And,nowCaryn,whosemusicwe’vebeenlisteningtothismorning.

Caryn(Panelist)

Thankyou.MynameisCaryn.I’mfromNewYorkCity,andI’m30yearsold.Ihavepalmarandplantarhyperhidrosis.Ifirstlearnedaboutmyconditionduringelementaryschool.Ididn’tunderstandwhynoonewantedtoholdmyhandindanceclass.Iaskedmymomwhatwaswrongwithme,andshesaidthatwhenIwasatoddler,justlearninghowtowalk,Iusedtoleavesweatyfootprintsonthegroundbehindme.Andeversincethen,I’vebeenexcessivesweating.Thedoctorsnevermentionedmycondition,andtherewerenotreatments.Backthenwedidn’tevenknowmyconditionhadaname.AndlittledidIknowhowhyperhidrosiswouldstronglyimpactmyentirelife.Hyperhidrosismakesordinarytasksastruggle.Handshakesaremynightmare.Atajobinterview,Iamsometimesmorenervousaboutthathandshakethananythingelse,andIwatchandcringeaspeopletrytodiscreetlywipemysweatofftheirhands.Whilepeoplemightthinkmyhandshakeisgross,they’llneverfullyunderstandhowuncomfortableIfeelinmyownskin.WhenIwritewithpaperandpen,thepagewillcurlupandtheinkwillsmear.Idon’tlikeholdingnewspaperbecausetheinkcomesrightoffonmyhandsandmyphonedoesn’trecognizemyfingerprintpasswordwhenmyhandsaretoosweaty.Ihavetotypeinthenumbersallofthetime.I’veevenhadtroubleturningthedoorknobwithhyperhidrosis.Ifeelbadifmyhandaccidentallybrushesupagainstsomeoneonacrowdedsubway.AndIwasmortifiedwhenIwasstartingoutmyfirstjobinretail.WhenIwascashingsomeoneoutatBarnes&NoblesomeonewasbuyingCD’sfromme,andtheyrealizedalloftheiritemswereallwetandtheywantedtoreplacethem.So,I’maclassicalflutistandmysweatyhandsarealwaysanissue.SweatwilldripfrommyhandsallthewaydowntomyelbowswhileIplay.And,oftentimes,I’mconcentratingmoreonnotdroppingmyflutethanactuallythemusicalityofthepiece.I’verustedmyfluteseveraltimestothepointwherearepairpersonneededtotaketheflutecompletelyaparttocleanandfixit.And,thiswouldhappeneveryfewmonths.And,it’sabouta$200costeachtime.Therepairpersonhadneverseenanythinglikeit.IremembergrowingupIwouldbesosweatyandIcouldn’tgetthroughjustapracticesession.Sotocoolmybodytemperaturedown,Iwouldfillmybathtubwithicecoldwaterandstandinthetubwithmymusicstandinthebathroomandgetthroughmymusicthatway.SometimesIwonderifit’spossibletoreachmypotentialbecauseofthiscondition.Myfingersdon’tmoveasfastasIthinktheycouldwithhyperhidrosis.Andyouknowfluteplayersneedtobeveryfast.Throughoutthesechallenges,I’vecontinueddoingwhatI’veloved,butIneverfeltliketherewasanywherethatIcouldturntoforhelp.Ifeltveryalone.Atrehearsals,Iwouldfanmyhandswithmysheetmusic,oraskforawindowtobeopened.AndIalwayshadmytowelwithmetosoakupasmuchsweatasIcan.Buthyperhidrosisispersistentandhasamindofitsown.ItsreallyhardformetotellpeopleaboutmyconditionandItrytohideitthebestthatIcan.AndIthinkit’sactuallyveryharmfulinasocialwaybecauseI’mnotcomfortablenetworkingasmuchasIshouldbeasamusician.Hyperhidrosishasmade

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mebecomeamoreintrovertedpersonthanmaybeIwouldhavebeenwithoutit.AndI’mnotfullyabletoenjoyactivitiesandbemyself.I’malwaysanxiousabouthowhyperhidrosisisgoingtoembarrassmenext.Todayandbecauseofhyperhidrosishasinspiredme,Iamgoingbacktoschooltobecomeaspecialeducationteachertohelpothersovercometheirobstacles.Icurrentlyhavetheopportunitytoteachmusictokidswhoareblindatacommunitymusicschoolontheweekends.Andbecauseoftheirvisualimpairment,Ineedtousemyhandsalottoguidethem.Morethanonce,thekidsmadeastatementoutloudfortherestoftheclasstohear.“Whyareyourhandssowet?”Or,“Stoptouchingme.”I’malwaysnervousthatthekidsaregoingtosaysomethinglikethiswhenI’mworkingwiththemandmakeascene.SometimesIquestionifIshouldhaveavoidedthiscareerbecauseofmyhyperhidrosis.AndIdon’twanthyperhidrosistoholdmeback,butitdefinitelywouldhavebeeneasiernottoputmyselfinthesesituations.Thetruthis,Idofeeluncomfortableinmyownskininalotofways.Whenmyhandsgetextremelysweaty,Idon’tknowwheretoputmyhands.Idon’tlikethefeelofthetouchofmyownhands.Thisconditionaffectsusallphysically,sociallyandemotionally.Andthebestchancethatwehaveforacureandforacceptanceisincreasedawarenessandunderstanding,sothankyou.

AngelaBallard:Thankyousomuch,Caryn.Andlast,butnotleast,Sachin.

Sachin(Panelist)

Hieveryone,myname’sSachinandI’m25yearsold.I’moriginallyfromSriLanka,butIflewoutfromtheBayareaforthisevent.Ijustwanttosaythankyousomuchforbeinghere.Itrulyappreciateyourpresence.So,Imusthavebeenabout7or8whenIhadmyfirstencounterwithhyperhidrosis.Ivividlyrememberbeingathomeandwatchingtvwithmymother,withtheACturnedontokeepuscoolfromthetropicalheatofMalaysia.Imovedmyfeetandplacedthemonmymother’slapandshenoticedtheyweredrenchedinsweat.Exclaimingsomethingtotheeffect,“Whyareyourfeetdripping,it’scoolindoors.”Iwassophasedbythisincident,itmademecognizantofhowotherunusualwaysofmybodysweatingstartedtoaffectmydailylife.Forexample,I’maleft-handerandwhenIusedtocompletewrittenassignmentsinelementaryschool,IrememberhavingtocontinuallywipemypalmonmyschoolshortstokeepthemdryorelseIriskmyassignmentsturningintoanillegiblemessofsweatandleadsmudge.However,becausethiswasanembarrassingtopictospeakabout,Imostlykeptmymouthshutandgotonwithlife.Especiallyknowinghowunforgivingkidscouldbe.IrememberwhenIwas12or13,theconditionhadreachedaboilingpointforme.Irecentlygonetoaschooldancewearingagrayshirtanddevelopedlargeunderarmsweatstains.Thestainswereconsiderablylargerthanthesizeofmyoutstretchedhands.ThiscausedmetopanicandIrecallcrumblingandstuffingmyunderarmswithahandfulofpapertowels.Mywardrobewasthereonstockedalmostexclusivelywithblackclothing.And,ifIworealight-coloredshirt,ImadesureIbroughtanextrashirtinadrawstringbagjustincasemyhyperhidrosissetin.Mybiggestfrustrationwithhyperhidrosiswasthatitwasmostlyrandomandepisodic.ItwasextremelyhardformetopredictwhenIwasgoingtobreakoutsweating.Makenomistake,therewerecertaintriggersthatwouldcausehyperhidrosissuchaseventsthatwouldcauselotsofsocialanxietyorevenextremeheat.However,IwasalsosweatinguncontrollablywhenIwashavingcausalconversationswithpeopleorrelaxinginanair-conditionedenvironment.Afterthesheerembarrassmentsufferedattheschooldance,Idisclosedmyexperiencestomyprimarycarephysician.Itwasadauntingtaskformy13yearoldselftosharethisembarrassingissuewithmydoctor.The

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doctorrespondedwithsomethingalongthelinesof,“You’relivinginatropicalclimateandareenteringpuberty,youdon’thavetoworryaboutit.”“It’snotimportant.”Hisresponsehumiliatedmeandmademefeellikemyconditionwasatrivialmatter.IconvincedmyselfthatittrulywasahormonalissuethatwasexacerbatedbythetropicalsettingIwasin.IalsoblamedmyexcessivesweatingonmentalorpsychologicalweaknesseventhoughIwasahappyconfidentpersonbynature.I’dgottenthroughmyteensbecomingamasterindisguisingtheissue.Myfirstguitarclassat14withthefretboardallwetandtheteacheraskedmewhattheproblemwas.“Oh,don’tworry,Ijustwashedmyhands.”Afterahandfuloflessons,theembarrassmentwastoomuchtohandle.AndIendedupself-teachingmyself.Greetingpeopleatsocialevents,“Ohsorry,Ijustusedhandsanitizer.”Theseresponseswouldoftenresultinanawkwardencountermakingmeanervouswreck.CreatinganexcusewaseasierthanexplainingthatIhadexcessivelysweatyhands,somesortofmedicalcondition.EspeciallysinceIdidn’tevenknowwhatthismedicalconditionwas.Fastforwardtomycollegeyears,IwasinAmericaanditwaswinter.Thiswasabigmomentforme.WasIstillgoingtosweatinthecoldweatherafterpubertyhadstoppedlikemydoctorsoconfidentlystated?Theresoundinganswer,yes.Notanouncechanged.Sometimeswhentheygotreallycold,myhandsandfeetwouldsweatevenmore.Howthisphenomenonisdescribedphysiologically,Idon’tknow.Thispromptedmetoextensivelyresearchexcessivesweating.WhereIlearnedaboutthemanyformsofhyperhidrosis,andthetreatmentmethodsrangingfromtopicalantiperspirantslikeDriclorandDrysol,twomajorsurgicalprocedureslikeendoscopicthoracicsympathectomy.Iwasayoungstudentnotwillingtoundergosurgery,soItriedmyhandattheantiperspirant.Itwasminimallyeffective,andalsocausedpaintomyhand.Aweird,stingingburningsensation.Theminimalbenefitwasn’tworththepain,soIstoppedusingthetreatment.Ihadthentriedvariousformsofmeditation.Perhapsthinkingmyconditionwasrelatedtostressorsomesortofpsychologicalormentalweaknesstominimaleffect.FastforwardsomeyearsandIcameacrossaclinicaltrialclaimingtotreattheeffectsofpalmarhyperhidrosisusingheatwavetechnology.Iwassosickandtiredofdealingwithhyperhidrosis,soIsignedup.Wasthetreatmenteffective?Kindof.Wastheprocedurepainfulandinvasive?Absolutely.Thedoctorinjected20milsofnerveblockingagentinthebaseofmyhandbeforeproceedingwiththetreatment.Myhandtookthreeweekstorecover,developingpainfulblistersalongtheway.Atonepoint,thepainofoneoftheblistersbecamesosevereandunbearablethatIhadtoresorttodrainingmyselfusingaseptictechnique.Andbecausethetreatmentwasonlypartiallyeffective,Imadethedecisiontocontinuewithfollowuptreatmentshopingtheintensepainanddiscomfortwouldbeultimatelyworthit.Inconclusion,Ihopemystorypaintsapictureofthechildhoodhardshipsonewithhyperhidrosisgoesthrough.Andthetroublesanindividualwillenduretoreceivetreatment.We’vebeenbattlingwiththisconditionforourentirelives,andIhopethisforumwillgeneratetheneedawarenessinthemedicalindustrytodevelopsafeandminimallyinvasivetreatmentsbytopresearchersandphysiciansintheaudiencesothatscaredkidslikemy8-yearoldselfcanonedayreceiveeffectivetreatmentwithoutfeelingmisunderstoodorunderminedbyotherchildren,parentsanddoctorsthemselves.Thankyou.

AngelaBallard:Thankyouagainforallofthesereallyincredibletestimoniesfromourpanelists.Andasweheadintotheopendiscussion,I’mjustcuriouswhoherefeelsliketheyheardpartoftheirstory?Yes.Soforthoseofusontheweb,itseemslikethemajorityintheroom.Thanksagaintothepanelists.So,justareminderwehavethesevisualaids.Wetookthesurveyaheadofthismeeting.About150peopleresponded.It’snotscientificdata,butwe’regoingtouseittohelpguideourdiscussion.Quick

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noteaboutthedemographicsforthissurvey.MostofthepeoplewhoparticipatedwerefromtheUS.WedidhavesomerespondentsfromCanada,Australia,GreeceandtheUK.70%female,30%male.Theagebreakdownwasabout20%eachinpeopleintheir20s,30sand40s.About30%,age50orolder.And10%youngerthanthat.Youngerthan20s.Raceandethnicity:65%White,13%AfricanAmerican,10%Latino,6%Asian/PacificIslanderand6%multi-racial.Ifanyonewantsmoreinformationaboutthesurvey,wecanprovidethatlater.Ashascomeup,weknowhyperhidrosisstartsprettyyoungoften.Somostpeopleinoursurveywere10oryounger.Sowhohereinouraudiencefeltthatthisstartedintheirchildhood?Again,majorityofpeople.Soyouguysreallyaretheexpertsonthiscondition.Mostofyouhavebeenlivingwithitforaverylongtime.Sowe’reheretotalkaboutfirsttheburdenofthisconditiononyourlives,limitationsindailylife.Kindofit’soverallimpactonyourdailylifeandhowitsaffectedyourchoices.Whowouldliketokickoffourdiscussion?Wouldanyone?So,justareminderourstaffwillbringyouamicrophone.Stand,tellusyourname,firstname’sfine.

OpenDiscussion

AudienceMember:Hi,Ihavecraniofacialhyperhidrosis.MyquestionforyouguysisIfeellikeIhavefromdealingwithit,IhavegonethroughlikethismentalcrazinessandIknowthatwealldo.I’mjustwonderingifyouhavegoneintoanymentalprescriptionsormedicinefromitotherthanjustthemedicinethatsupposedlyhelpsit?That’smyquestion.

AngelaBallard:Anyonewanttorespondtothat?Anyofourpanelists?Anyonewanttoshare?Thisisathrowablemicrophoneforthosewithagoodarm.

AudienceMember:Well,I’mnotsurewhatexactlyyouwantmetoanswer.WhetherI’vetriedmedicationinthatfield.Well,socialanxietyandanxietymeds,depressionmeds,bipolardisorder.Imeanthat’ssomethingthatmydoctordiagnosedmewith.ShesaidIhavethat.Idon’tknow.Alotofitkindofhastodowithhyperhidrosisaswell.It’ssortofintervenes.So,yeah.AndIdowanttosaysomeofthethingsIneedmedstohelpmewithitalittle.

AngelaBallard:Thankyouforsharing.Yes,therearesomecomplexissues.So,showofhandswhoherefoundthatinthepastweek,hyperhidrosisaffectedyouractions,yourplanning,yourwardrobe.Right?Yeah.Ok,sofromoursurvey,wesawthatsocialimpairmentwasoneofthetopmostbothersomeimpactsofhyperhidrosis.Wouldanyonecaretokindofelaborateonthat?Likesomeofthesocialorrelationships.Howyougotowork.Thingslikethat.

AudienceMember:Hi,I’manadvocateforinmatesinSt.LucieCountyandIhavethisproblemthatwhenIgointothejailsandIsitdownbecauseIhavehyperhidrosis,Isweatbetweenmylegs,thatIwasverymuchlikethepicturethatthedoctorshowed.Andsothat’sembarrassing.YouknowwhenIhavetogetupandleaveandumpeoplelookatme.Like,“Didyouwetyourpants?”Youknow,butalsoIhavetogointothecourtroomandI’minfrontofthejudgesandthelawyersandI’msweatinglikecrazy.Sweatscomingoutofmyforehead,myhair’sallwet,andit’sveryembarrassing.Ibegintobeshunned.Peopledon’tlikeshakingmyhand.It’slikeI’mthecrazyone.Herecomesthecrazyladyorthewetlady.I’mthedrip.So,it’sithasimpairedmyabilitytobeabletocommunicateandtohavepeopletakemeserious.AndespeciallywhenI’mdealingwiththeinmatefamilies.So,that’smyexperience.

AngelaBallard:Thosearereallyimportantpoints.Thanksforbringingthoseup.Ithinkbackhereinthecorner,wehaveanothercomment.Thankyou.

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AudienceMember:I’vegotpalmarandplantarhyperhidrosis.Itstartedasababy.MyparentsputfootypajamasonmewhenIwasjustacoupleofdaysoutofthehospitalandIsoakedthroughthem.Sotheytookmebacktothedoctor.Andthankfullythatdoctorkindofinstinctuallyknewhyperhidrosis.Hedidn’tknowwhattodoaboutit,butheknewwhattheissuewas.Andthishasaffectedmeinschool,inmyeducation.Peoplelookatmedifferently.Ioftentimesjusttrytobethelastoneoutoftheclass,soIsitinmychairalittlelongersosomebody’snotlookingatmychairlike,“Whyisherchairallwetandwhyishertableallwet?”I,uh,actuallyinhighschool,IwithdrewmyselffromschoolandIwasthetopofmyclass.IputmyselfintoanindependentstudysothatIcouldputmyselfthroughschoolandgoatmyownpace.IactuallyendedupgraduatingwhenIwasabout2monthsbeforemy16thbirthdayandIgraduatedwithmyhighschooldiploma,butIdidn’thavetodealwiththeembarrassmentofsittingthroughschoolwithmysweatyhandsandmysweatyfeetandmysweatylegs.ThencollegecamearoundandIwasa16yearoldincollege.And,Ididn’treallyknowwhattosaytomyprofessorswhenIcouldn’tkeepupwiththenote-takingbecauseIdidn’thaveadisabilitythatwouldallowmetohaveanote-takerandwhetherIusedmycomputerorItriedtohandwrite.Eitherwaywasdifficultformetokeepup.Iwouldconstantlyhavetostop.BythetimeIwouldpickupmypencilagainormykeyboardagain,theprofessoriswayfaraheadofme.Andyouknowprofessorshavedifferentwaysofdoingthings.MaybetheyuploadtheirnotesonlineandIcanlookatthemafterwardsandjustsitandlistentotheclass.But,itwasn’tsomethingthattheywouldrecognizeasarealissueinmyclassroom.And,somethingthataffectedmeandIeventuallydidn’tendupkeepingup.Iwentto3yearsofcollege.MyplanwastogetmyPhD,butIendedupfindinganotherpath.IbecameaprivateinvestigatorasanindependentcontractorsothatIcoulddomyownworkandmakemyownwork.Thatway,Iwouldn’thavetodealwiththepressuresandthesocialanxietiesofotherpeopleandwhattheymaythinkofme.BecausethatfirsthandshakejustlikeCarynsaid,I’mmuchmorenervousaboutthehandshakethantheinterviewitselfbecauseI’mveryconfidentinmyselfandwhatIcandoandmyknowledgeandwhoIam.Butthatfirsthandshakeisterrifyinganditreallyuh,itjustsetsthestageforeverything.

AngelaBallard:Thankyou.

LisaPieretti:Ms.B.R.,Iwasjustwonderingifyoucouldshare.Tellme,becauseIknowyousowell.Ithinkeverybody’sfeelingalittleshy,maybeevenalittlechillytoday.But,whendidyourhyperhidrosisstart?

AudienceMember(B.R.):MyhyperhidrosisstartedwhenIwasway,waylittle.ButwhenIfirststartedgoingtokindergarten.IwouldhavetoputawhitehandkerchiefundermyhandsandIwasgoingtoCatholicschools,andthenunswouldcomebyandhitmyknucklesbecauseIhadthiswhitethingunderneathmyhands.ThenIwouldputapieceofpaperasIgrewolder,Iputapieceofpaperunderit.ThenIwouldgetaccusedofcheating.Sotheteachersreallydidn’thaveveryhighremarkstowardsme.AndtheywouldtellmymotherthatIwouldnevermakeanythingofmyself.So,whenIgraduatedfromhighschool,Iwantedtogotocollegeandmymothersaid,“No,you’retoodumb.”AndIneverhadanyfriends.Duringschool,Iwasalwaystheoutcast.Iwasjust,youknow,nobodywantedtoholdmyhands.AndthatthingaboutRingAroundtheRosie,Ididthatsomanytimes.Ijustfinally,Ijustwouldhide.AndIkepttomyself.ButIknowwhatthedepressionislike.Ithasaffectedmywholelife.It’ssomethingthatIhadhadtodealwith.

AngelaBallard:Thankyou.Thankyousomuchforsharingthat.

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LisaPieretti:And,Ms.B.R.,thatyou’reanewfriendtousattheInternationalHyperhidrosisSociety,andwegottoknowyoubecauseofaclinicaltrialthatyoutriedtoenrollin.Andwereyouabletobeinthatclinicaltrial?

AudienceMember(B.R.):No,Iwasnotable.Lisareturnedmytelephonecall.Iwasatmywit’sendandIwasjustcryingandmyhusbandsaidyou’vegottodosomething.SoIstartedcallingaroundtothedoctorsinPortSt.Lucie,andnobodydealtwithit.AndsotheytoldmetocalltheInternationalHyperhidrosisSociety.Anyway,LisareturnedmycallandIwasjustcryingmyheartouttoher.Soshegavemethisnumbertocallaboutaresearchstudy.SoIcalledthem,andIwastoooldtobeintheprograms.

AngelaBallard:Thankyou.We’llbetalkingmoreaboutclinicalresearchandpeople’sexperienceswiththatinthesecondportion,too.So,thankyouforbringingupthatreallyimportantpoint.We’llgoherefirstandthenoverthere.It’sgreattoseeeveryone’swarmedup.

AudienceMember:GoodMorningeveryone.Firstofall,IwanttothankeveryoneforactuallysharingtheirstoriesandthereasonwhyIsaythatisbecausedealingwiththisconditionitfeltlikeatonepointIwasprettymuchtheonlypersonthatwasactuallydealingwithaconditionlikethisandIdidn’tknowanyoneelsethatwasactuallydealingwithit.IhadfriendswhoIwouldalwaysshakehandswithandtheywouldlookatmeandsay,“Manwhyareyourhandsalwayssweaty?”AndIneverhadacomebackforit.But,I’mnotgonnakeepyouguystoolong.ButIwouldsharealittlebitofmystory.WhenIwasabout17yearsold,IfoundoutthatIactuallyhadhyperhidrosis,whichIdidn’tknowexactlywhatitwasatthetime.But,IplayedfootballinhighschoolandIwasaquarterbackandIcouldneverbeabletogriptheballwhenIturned17or18andIwastryingtofigureoutexactlywhymyhandswouldalwayssweat.AndI’mfromGeorgia.IfanyoneknowsinGeorgia,it’sveryhotandit’shumidonFridaynights.And,so,soIcouldn’tgripthefootball.Iwouldalwaysusethestickumthatyouactuallyputonyourcleatswhenyou’retryingtotapeyouranklesup,andIwouldusethattoactuallybeabletothrowthefootball.AndsoIstarteddoingalittlebitofresearchandendupfiguringoutthatthisisactuallyadiseaseandsomethingthatIwasgonnabeabletohavetodealwiththroughmylife.SoonceIdidresearch,IreachedouttoLisaonedayjustyouknowthrowingsomethingouttherebecauseIwasgoingthroughtheinterneteachandeverydaytryingtofigureoutexactlywhatwaswrong.AndsheendedupinvitingmeandmyfamilytoAtlantasowecoulddooneoftheresearches.Andforthe6months,IdidtheBotoxanditwasgreat.Itreallyhelped.Butafterthat,Ireallycouldn’taffordtoactuallycontinuetodoit.So,sincethen,thatwasabout3-4yearsagomaybe,I’vebeendealingwithiteversincethen.LikeIsaidearlier,Ireallyappreciateeveryonesharingtheirstories.IcouldprobablygoonalldaytalkingaboutsituationsthatIactuallyhave.OfcoursewithmeworkinginanenvironmentwhereIhavetoshakehandseachandeveryday,it’sveryembarrassingtohavetogoupandshakesomeone’shandandfeellikeyou’reconfident.Thenassoonastheywipetheirhandsomewherethenyousay,“ohman,”youknowtheregoesandthenyouknowyouhavetorunintotherestroomandgowashyourhandsandstuffsoyoucantrytogainthatconfidenceback.ButIreallydoappreciateLisaforinvitingmeandmyfamilyoutheresowecantrytotacklethisissueanddealwithit.

AngelaBallard:Weappreciateyoubeinghere.Um,Caitlyn,istheresomethinggoingoninthewebyouwanttoletusknowabout?

CaitlinMcDonald:SeveralfriendsfromallovertheworldwhoarelisteningandonthewebchatandwehaveAustraliaandIndiaandthey’reona30-seconddelay,sothey’rehearingthingsalittlebitdelayed

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asfarasthisgoes.We’vehadsomegoodquestionsandIthoughtIwouldaskforthem.Oneofthemwas,“Aretherewaysthatwecancoverthecostofinsuranceanddecreasingthecostofthesedrugsthatmanyofthemcannotaffordandit’scovered,butthecopayoroutofpocketexpenseissohigh.Isthereanywaythatwecanadvocateforthat?”That’soneandthenbecausesomeofourfriendsareworldwide,theyalsoareaskingaboutchaptersindifferentlocationsbecauseeveniftheywereabletogethere,thecostoftheplaneticketwouldn’tbecovered.And,thenahugeissuethatthey’reallsharingfromchildhoodon,alotofthemaresayingtheysuffermentallyandtheyreallywantsomehelpandit’sreallyaffectingthem.

AngelaBallard:Obviouslywe’rebringingupsomereallypowerfulissuesandemotionsandIdowanttoreiteratethatwedohaveinformationaboutthatSuicidePreventionHotlineifsomeoneneedsmoreprofessionalsupport.Intermsofcostoftreatment,thatisafrustrationthatispervasiveandwewillprobablytouchonthatmoreinoursecondsessionwhenwe’retalkingabouttreatmentsmorespecifically.Lisa,Ithink,willtouchonchaptersperhaps?Yes,weareaninternationalorganization,sowedoexpandourreachgloballyandwedosometimestraveltoothercountries.Let’sgetbacktoimpacts.Therewere2womenatthistablerightherethatwereanxioustoshare.Thankyousomuchforyourpatience.

AudienceMember:Hi,Iwantedtotellyouaboutmystory.Ihavehyperhidrosisofmyhandsandfeetandit’sbeenamajorimpactonallaspectsofmylife.Ican’trememberatimewhenIdidn’thaveit.IhavethesameRingAroundtheRosiestorythatotherpeoplesaidsoIrememberbacktokindergarten.Inschool,Iwasneverabletowritewithoutatowelundermyhandsandat6thgradegraduation,oneofmyso-calledfriendswroteinmyautographbookquote“Dearmushyfingers…”thendrewapictureofasweatyhandwithwaterdrippingfromit.Hyperhidrosisaffectsmeonadailybasis.Shakinghandsisanembarrassment.Becausemyhandsandfeetsweatsomuch,Iplanmyvacationstoavoidhothumidclimates.Idon’tgoanywherewithoutpapertowelstoabsorbthesweat.I’munabletowearboots,they’retoohot.And,unabletowearsandals,myfeetsliprightoffthem.SochoicesformyeverydaywardrobearedependentonwhatIcanwearonmyfeet.Mycareerchoicewasverymuchimpactedbyhyperhidrosis.I’maretireddiagnosticradiologist.ButIstartedmycareerasaninternalmedicinephysician.Ichangedmyspecialtybecauseofmydifficultyexaminingpatients.Myhandswerealwaysverywetandcoldanditmadeforaveryuncomfortablesituationforbothmypatientandmyself.IalsowanttonotethathyperhidrosiswasnevermentionedwhenIwasinmedicalschool.Ineverheardofit.Myrecreationalactivitieshavealsobeendictatedbyhyperhidrosis.Ilovetodance,butit’sdifficulttofinddancepartnerswhowillaskmetodancemorethanonce.It’sembarrassingandalsodifficulttodancebecausemyhandsaresoslippery.Iwasneverabletoplaytennisbecausetheracketslippedoutofmyhands.Icouldn’tparticipateingymnasticsbecausemyhandswouldnotgriptheequipmentevenwithchalkonthem.Andmyfeetslidrightoffthebalancebeam.WhenIknitandcrochet,IhavetowearglovesandyogaisnotpossiblebecauseIslipoffthemat.Iknowthatstudieshavesuggestedahereditarycomponenttohyperhidrosis.Bothmyparentsandmybrothersufferfromit,butarenotbotheredbyitnow.MaybeI’llgrowoutofit.Icanonlyhope.Thankyou.

AngelaBallard:Thankyou.

AudienceMember:I’mfromDallas.I’vehadhyperhidrosismyentirelife.AndIfeellikeIhavealotofthesamethingsthateverybodyhasbeensaying.ButonethingthatIwanttomentionthatIhaven’theardtoday.ButIhavetalkedtosomeofyouaboutitlastnightandthismorning.Ifeellikewhenmy

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handsstartsweating,eventhoughwe’reinacoldroomlikethis,andithelpsitkindaslowsdownalittlebit.Butbecausemyhandsarestilldamp,myfingersgetvery,verycold.Likeicecoldandsometimesitevengetstothepointwhereit’spainfulandIfeellikethat’simportanttomentionbecauseit’snotjustIfeeluncomfortable,butI’mactuallyexperiencingpaininmyfingertipsfromthecoldnesssoIjustkindawantedtothrowthatoutthereandseeifanyoneelsehasthatoratleastletthedrugmakersknowthatthisisanotherimportantthingtothinkabout.

AngelaBallard:Yeah,whoelse,raiseyourhand.Whoelsegetsextremelycold?Yeah.Coldanduncomfortable.

AudienceMember:Ok,I’mgoingagain.I’mgoingagain.So,aboutdailyactivitiesandlife,I’madancer.Hi,I’madancer,Idoitforaliving.And,whathasbeenthecraziestthingisthattheLordhaschosenme.Thisismycalling.IfeellikedanceishowIexpressmyself,butum,thestageandthelightsandthepeoplelookingweallgetnervous.Allofmyfriendsgetnervous.They’vebeenprofessionalsforever.Theygetnervousallthetime,butIgetnervousandIsweatcrazily.Likeovermyface,everywhere.AndeventhoughIkeepseemingtogetopportunities,Idon’tfeelhappywiththembecauseIamstilltryingtobedry.Iamthelifeoftheparty,I’malwayslaughing,I’malwaystalkingbutI’malsoknownasthepersonthatyoucan’treallydependon.Hedoesn’treallyliketocommunicate.ButthosearebecauseIdon’twanttoputmyselfinpositionswhereIhavetocoverupmysweat.IfeellikeI’mamasterofcoverup.LikeIneedtomakesurewhenIwalkintheroom,Ineedtoknowwherethebathroomis,wheretheexitsare.Ialwayshavemyhandytrickallthetime,evennow.Irecentlygotontheposterofmycompany.Mypicture,yep.MypicturewillbeeverywhereinNewYorkCity,andyouwouldthinkthatIwouldbelike,“Yes,it’sme,it’sme.”Iamterrifiedtoseemyselfortowalkthroughthetrainandhavesomeonenoticethatit’smeandaskme“Isthatyou?”Idon’tknowwhat’sgoingtohappenafterthat.I’mterrifiedofbeingseenbecauseIdon’tlikethewaythatIlookwhenI’msweating.Idon’tseemyselfdoinganythingelse.Ihavetodance.Iwakeupthinkingaboutdance.Dance,dance,dance.Likeevenyoga,Iliketotakehotyogawhereeveryone’ssweating.So,it’sfine.So,I’vemadenecessaryprecautionslikeweallhavedone,likewealldotohelpdealwiththis.And,Idon’twanttoanymore.IfeellikeIwouldbeabetterdancer.IwouldbeabetterpersonifIdidn’thavetodealwithitorlearning.Ifeellikeallofuswantacure,yes,yes,thatwouldbelikethegreatestthingrightnow.ButIfeellikeawayofdealingwithitforme.Ikeephearingpalmar,Ihaven’treallyheardaboutcraniofacialatall.

AudienceMember:Iwouldliketospeakforthoseofuswhodohavecraniofacialhyperhidrosis.

AudienceMember:Yes,pleasetakeit.

AngelaBallard:You’reright,weneedtotalkaboutcraniofacial.Andwe’dlovetohearyoushareonthat.

AudienceMember:I’masweater.Ihavecraniofacialhyperhidrosisorwhateveryouwanttocallit.Thereasonformybeinghere,andit’s,Lisathankyousomuchformakingthispossible.IliveinNewYorkCityaswell.Idon’tliveinacarsociety.IwalkandItakepublictransportation,soIcan’thidebehindanair-conditionedcar.Iwasbornthisway.Idonotthermoregulatelikeaveragepeople.IwalkonthestreetsofNewYorkCity.Busesandsubways,andneverseeanyonelikemyself.CominghereandhavingmetMary,havingmetthesegirls.PeoplewhoactuallyunderstandwhatitisthatI’velivedwithsinceI’machild.I’vebeenaskingforhelp,beggingforhelpforover50years.And,havebeen

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disregardedbythemedicalworld.Nobodycares.Nobodycares.IhavebeenfluffedoffsinceI’machild.“Oh,she’shot.”I’mhot?I’velivedmylifewithfoldedupsquaresofpapertowelsandhandfans.I’vegotthemlikeflowersinvasesthroughoutmyapartment.Imeanfans,airconditioners,thereisnotmovingair.Rightnow,it’sreallychillinhere.Imeantothepointwhere,yes,whenyoudon’tthermoregulate,youcangofromthinkingmyheadisgoingtoblowoffmyshoulderstohavingtorunaroundmyapartment20minuteslaterwithasweatshirtwithahooduparoundmyheadandglovesonlikeanut.Butthisishowit’slivingyourlifefromaplaceofextraordinaryhumiliationandembarrassment.Nottomentionthediscomfort.Thethingaboutcraniofacialhyperhidrosisthatisnotaddressed,I’mtheonewhowroteIamahumanvolcano.BecauseIamahumanvolcano.Whateverthisis,it’snotnecessarilyaboutthesweat.Ihatethesweat.IhatethefactthatIcanfeelwhatitfeelsliketofollowthiseruption.Imeanitjustitstemsfromwithin.Anditcrawlsupyourentirebodyandblaststhroughyourscalpandyourface,drippingrivers,rivuletsdrippingdownyourface,downyourneck,throughyourhair,downyourchest.Brightred.Icannotmakeeyecontactwithpeopleonthestreetanymorebecausehere’smystory.PostmenopauseithasgottensomuchworsethatIcanoftentimesnotleavethehouse.IlostajobbecausetheuniversetellsmeI’mold.AndIcan’tevengotoajobinterviewbecauseIcannotgetfromPointAtoPointBwithoutlookinglikeanalien.Ishowupeverywherewithahandfanlikeanut.Withahandfanandpapertowels,youcannotcooldownyougetwhereyou’regoing.Ihavetoplantogoplaces20minutestoahalfanhourbeforeIhavetobethere,findsomeplaceair-conditioned,sitdown,fighttearsandhopethatIcanthermoregulatetoapointwhereIcanactuallyhaveaconversationbecausewhenyougetthathot,youcannotthink.Youcannot,Ican’tformsentences.Ineverleavemyapartment,Inevergetfrommyapartmentdoortotheelevatorwithoutblowingagasket.Icannot,Ineverwalkintomyapartmentbuilding.Ineverever,evergethomewithoutbeingonthevergeoftears.SohotthatIcanbarelythink,andsoembarrassedthatI’mgoingtohavetofacesomebodyandhavetoexplain.BecauseIhavetoexplainallday,everyday.Someone’sgoingtosaysomethingtome.Tiredofit.I’mtiredofit.Whenyoutalkaboutanxietyanddepression,thishasruledmylife.Ithasruledmylife.Ithas,mycareerwaskindofintimateeventhoughIworkedinfactorieswhateveritiseverybodyhasalwaysknownthatI’mthewoman,I’mthegirlwiththefan.CanyouevenimaginebeingtheonlypersoninAsia,inairports,I’mtheonlyonewithafan.I’minChina,I’mtheonlyone,I’mlookingaroundthisairport,I’mtheonlywiththefansgoing.

AngelaBallard:I’msogladyoubroughtupcraniofacial,anditremindsusthatwedoneedtotalkaboutplantar.Wehaveabout5minutesleft.So,thankyousomuchforsharing.Youbroughtupsuchvaluablepoints.Thankyou.So,I’mwonderingifMs.K.A.wouldbewillingtotalkaboutherexperiencewithsweatingofthefeet,plantarhyperhidrosis.Isthatok?

AudienceMember(K.A.):Absolutely.I’mfromOmaha,Nebraska.Ihavehadhyperhidrosis,plantar,palmar,axillary.Ijustsweat.I’mjustasweatyone.SinceIwas,sinceIwasveryyoung.Irememberat12,Ithinkthat’sbecausewhenyoustartrealizingthatyou’resociallyawkward.Versuswhenyou’reyounger,andeveryone’sweird.So,myfeetsweatsomuchandIlovecuteshoes.Reallylovecuteshoes.ButIcanneverfindthemandIcanneverkeepthembecausemyfeetsweatsomuch.It’snotworththeinvestment.So,I’mlikeorthopedicshoes,yay!Absorbentsocks,youknowyoujusthavetoovercompensateinsomanydifferentwaysjusttogetthroughyourdays.Whenitcomestothedepressionaspect,yep,I’mmedicated.Becauseit’shardto,youhavetopretendthateverythingisnormalthroughallofyourdays,anditbecomesoverwhelmingandexhaustingbecauseyoucan’tbeyoubecausewhoyouareit’snotacceptable.Withmyplantarsweating,Ican’twearsandalslikemanyof

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you.OnceIfoundapairofflipflopsthathadlikethewicker,wovenpatternandIlovedthosethingsandIworethemout.ButthosearetheonlyonesIcouldwearwheremyfeetwouldn’tslide.I’vetwisted,sprained,darnnearbrokemyanklesfromtryingtowearjustregularshoes.Tryingtobebarefootinmyhouse.Whereit’sadanger,whereIcan’t,Idon’tfeelsafebeingbarefoot.OrIdon’tfeelsafewearingshoes.It’slikewhataremyotheroptionswhenyouhavesuchlimitedresources?

AngelaBallard:Thankyou.Youknow,Ithinkit’sreallyimportanttobringupthesafetyissuebecausethat’ssomethingthatwe’veheardbeforethatthereareaspectsofexcessivesweatingthatbringupsafetyissues.Soweonlyhaveacoupleofminutesleft.I’msosorry.Justwanttotalkaboutthisslideverybriefly.Whatworriesyoumostaboutyourhyperhidrosis?Andyouguyscanseesomeoftheresponses.Acommonworryisthatthisissomethingthatonewillpassontotheirchildren.SoIwaswonderingif…Ms.D.C.hadsentusagreatfamilytree.IsMs.D.C.here?Weonlyhavelike2minutes.Canyoujusttalkabouthowit’simpactedyourfamily?

AudienceMember(D.C.):Absolutely.Myparentsdonothaveit.Mysisterhasbothplantar,palmarandunderherarms(axillary).Theinteresting…mybrothernevergotit.However,Ihave2daughters.Onehasit,mygranddaughterhasit.Shewillnotwearshoes.Shewillnotwearsocks.Herfeetwillbeicecold,andshewillnotputonshoesandsocksbecauseshecannothandlethesweating.She’s18months,bytheway.Ihaveabrotherwhohas4children.Hisoldestdaughterhasit.Sheprofuselysweatsunderherarmstothepointwhereshewasanurseandquitandistryingtofigureoutwhattodowithherlife.Hehasayoungsonwho’shaditsincehewasborn.So,wehaveitthroughourfamily.Mysisterhas3children.Only1daughterhasit.Noneofhergrandchildrenhaveit.So,wedon’tunderstandwhat’scausingit,orwhat’shappening.Theinterestingthingismydaughtermarriedamanwhohasnohistoryofitinhisfamily,buthisdaughterhasit.Sothey,betweenthetwoofthem,becausemydaughterandhe’spassingitdown,theirchildrenarehavingit,somygrandchildrennow.IhaveitsonowIthinkitsinterestingtohaveitandfrommyperspective,Ididn’tknowwhatthiswas.Wejustallhaveit.BecauseIhadit,Icouldtellmydaughter.Icouldhelphergetthrough,whatwasthis,right?“Mom,whatdidyougiveme?”And,shecanpassitonandhelpherchildrenbecauseitsnotfunandIreallyappreciateeverybodytodaybecauseit’ssomethingyoudon’tthinkyou’reallbyyourself.Ihadnoideathatanybodyelsehadit,Ihadnoidea.So,it’sbeenreallyimportanttometofindoutthatwe’renotalone.

AngelaBallard:Thankyousomuch,Ms.D.C.

*RETURNFROMBREAK*

LisaPieretti:Allright,everyminuteisapreciousminuteforusheretoday.Allright.We’reallsettlingdown.Phonesareoff,right?Vibrateorturnthemoff.Puttheminairplanemode.Okay,Iknowallofyouhavesomuchmoretosay.So,whenwedotheopendiscussionlaterwe’regoingtotrytoclipthroughitsothateveryvoiceisheard.Butatthismoment,IwanttowelcomeyoubacktoTopic2.Eachofour5newpanelistswillpresentapersonalstatementregardingtheirhyperhidrosistreatmentjourney.Wewillhearfromeachofthe5panelistsandthenwewillhavetheopenforumforaudiencememberstoshareaswell.PleasewelcomeAngelaandoursecondpanelofhyperhidrosisexperts.

AngelaBallard:Great,soourtopicforthissecondsessioniscurrentapproachestotreatmentsandwewillalsotalkaboutthedownsidestocurrenttreatmentsandhopesforthefuture.We’regoingtostart

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withouresteemedpanelists.Andwith:Samantha,Eric,Michelle,Megan,WendyandSophia.And,we’llgetstarted.Samantha,thankyouforbeinghere.

Samantha(Panelist):IdonotrememberwhenIwasdiagnosedorwhenIfirstheardthewordhyperhidrosis.But,likemostofyouinthisroom,Ihavesufferedfromchronicexcessivesweatingformyentirelife.However,afteryearsofmisunderstandingandtrial-and-error,withnumeroustreatments,Iamfinallyonapathtobetterunderstand,treatandcopewithmyprimaryhyperhidrosis.Sincethere’snoknowncause,hyperhidrosisisoftennotwidelyknowntoorunderstoodbyhealthcareproviders.Asachildandyoungadult,doctorsprescribedtreatmentswithlittleornosuccess.I’vetriedtopicalaluminumchlorideproductslikeDrysol,iontophoresis,Robinul(ananticholinergic).Ieventriedherbalremedies,butultimatelynoneofthesetreatmentswaseffective.Experimentationwasfrustratingformyfamilyandme.Ihadtodeterminewhatspecialisttosee,howlongtowaittoseeresults,whateachtreatmentwouldcost,howmuchtimeitwouldtake,andingeneralknowwhowouldhavethebestanswers.About15yearsago,thedermatologistsuggestedtreatingpalmarhyperhidrosiswithBotoxinjections.AtthetimeIwasineligibleforinsurance,sotheamountusedwasminimalandthereforehadonlyamoderateeffect.However,thisopenedanewpathandforthenextseveralyears,Iwouldexperimentonandoffwithinjectablesinmyhandsandlatermyfeetandunderarms.Isawmanyphysicianswhoadministeredthistreatment,buttheresultswerelessthansatisfactory.Morethanoncethedosewastoolow.Othertimestheinjectionsweresodeepandcausedseveremuscleweaknessandpain,evenmoredebilitatingthantheexcessivesweat.Ialsohadsuccessesandfailureswithinsuranceauthorizations,reimbursementsandappeals.Sometimestheywerecovered,sometimesnot.Andfoundmanydoctorsunwillingorunabletoadvocatewithinsurancecompaniesonmybehalf.Inbetweentreatments,excessivesweatalwaysreturns.Waterdripsoffmyfeetandhands,invisiblesweatbeads,shoesslipofmyfeet,bodytemperatureissuesdevelopwhenadullsweatpenetratesforseveralhourscausingmyfingersandtoestoswellleadingtoanoveralldiscomfortandchillthroughoutthebody.IwasdiscourageduntilIconnectedwiththeInternationalHyperhidrosisSocietyandhadtheopportunitytoparticipateasapatientvolunteerforphysician’strainingworkshopfortreatmentofhyperhidrosis.Iparticipatedin2events,oneinBostonandanotherinAtlanta.Dr.Rice.EveryonethoughtitwasridiculoustotravelfromNewYork,buttomeitwasworththetime,effort,moneyandoverallexperiencetoworkwithanorganizationdedicatedtothiscondition.Atthesesessions,knowledgeablephysiciansadministeredthetreatmentusingtechniquesIhadneverbeforeseenandtookahands-onapproachwithpatients,trulyunderstandingtheirindividualneedsandconcerns.TheyknewhowmanyunitsofBotoxtouse,howandwheretomaketheinjections,techniquestominimizepainandpreventorreducepost-treatmentmuscleweakness.Becauseofmysuccess,afteryearsofhitsandmisses,IdecidedthatgoingforwardIwouldgotoDr.Pariser’steaminVirginiaformyBotoxtreatment.IliveinNewYork.Sonowmultipletimesayear,Imakethetriptohaveinjectionsinmyhands,feetandunderarms.Thetreatmentshavebeenextremelyeffectiveandthesweat,whichnegativelyaffectedmylifeforsomanyyearshasstoppedordiminished.Well,itisafardistancetotravel,I’mwillingtomaketheefforttogowhereIneedtogo,dowhatIneedtoandsufferthroughanypainorsideeffects.Notablymuscleweaknessanditseffectsjusttohaverelief.Thishasallbecomemynewnormal.However,sinceBotoxisnotacureanditseffectsworeoffafterafewmonths,Istartedexperimentingonceagainwithananticholinergicduringtheinterimperiods.Thistimeithasbeensuccessful.Iamdry.However,thistooisnotwithoutitsside-effects.Constantandseveredrymouth,difficultyurinatingandmore.I’mwellawarethatallofthesetreatmentsaretemporaryremedies,theyarenotcures.Myjourneyisongoingandlikelyeverlasting.And,IknowthatifIstoptreatmentatany

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time,thesweatwillcomeback.There’salsotheuncertaintyofanylong-termeffectsofmedicationthatImayconceivablytakefortherestofmylife.Iamfortunatetobeabletotravelfortreatment,andtohaveinsurancecoveragethatalleviatesasignificantfinancialburden.However,thatissubjecttochangeatanytime.Inthepast,coveragewasdeniedonlytobere-approvedthefollowingyearwithnoexplanation.MyprescribeddosageofBotoxiscurrentlycovered,however,atahigherspecialtydrugco-paymentrefilled3timesperyear.Plus,multipleco-paysfordoctor’svisits.Myhopeisoneforhealthcareprofessionalstoresearchandunderstandallaspectsoftheconditiontolearn,studyandbetrainedonthebestpracticesfordiagnosisandtreatment.AndtwotohaveinsurancecompaniescovertreatmentslikeBotoxandtomakesurethattheycoverenoughdosageandwithenoughfrequencyliketheywouldforanyotherdisease.Thesameopportunityshouldbeaffordedtoallsufferers.

AngelaBallard:Thankyousomuch,Samantha.That’sreallywellsaid.And,now,Eric.

Eric(Panelist):MynameisEric.I’mafourth-yearmedicalstudent.Hyperhidrosishascreatedadailyimpactonmylife.Causingmetocreatenewroutines,doextraplanning,andalwaysbethinkingonestepaheadastohowIcancontrolmyenvironmenttoavoidbeingdrenched.MyjourneywithhyperhidrosisbeganbackinmiddleschoolwhenInoticedthatIwastheonlypersonatthemiddleschooldanceswhocouldn’tstayoutonthedancefloor.Songaftersongwithoutneedingtostepaway,cooldown,orwipemyfaceandheadinthebathroom.ThefirsttimeItriedtostayoutjustlikeeveryoneelse,IgotcommentsthatIlooklikeIjustgotoutoftheswimmingpoolorjusttookashower.Becausemyhairandfaceweresoakingwet.Itriedtonotletitgettome.Butitdefinitelyimpactedmysocialinteractionsatthetime.Mynewroutineforthoseeventswastoalternatedancingforasongthenretreattothebathroomforasongtokeepthingsincheck.SomepeopleprobablythoughtIhadsomesortofissuewithgoingtothebathroomsooften.But,itwasbetterthanthereactionsIwouldgetbyvisuallybeingsoakedinsweat.Myinstinctwastoavoidorfleesituationswherethesweatingbecameanissue,soImissedoutonsomeimportantmomentswithfriends.But,overall,IfeltlikeIstilldevelopedstrong,lastingfriendshipsandthattheimpactofhyperhidrosiswasmanageable.Myfirsttreatmentforhyperhidrosiswasusingover-the-counterSweatBlockwipesthatmydadpurchasedformefromanonlineCanadianpharmacy.HehadnoticedandwebrieflydiscussedthatIsweateasilyandexcessively,butwedidn’thavealabelforwhatitwas.IjustfiguredthatIwasslightlydifferentinthatcapacity,andthere’ssomethingsimplelikeawipethatcouldfixmyissue.Lifewentonandthingsreallydidn’tchange,eveninhighschool.WhileplayingontheVarsitysoccerteam,Iwastheonlyonewhowassweatingwhilestretchingandduringwarmups.Ifiguredsincepeoplesweatwhiletheyplaysoccer,itwasnobigdealthatIwassweatingalittlebitearlierandalittlebitmorethaneverybodyelse.Iwasintip-topshapethen,runningatleast7milesaday.So,sweatingwasnotduetoalackofconditioning.ThesocialimpactthroughouthighschoolwassimilartomiddleschoolandIkeptusingthewipes,whichstillweren’tavailableintheUnitedStates.And,they’vehelpedmaybealittlebit.AsIwasabouttograduatehighschool,mydadhadheardofthisdoctorinSt.LouiswhowouldinjectBotoxinordertostopsweating.Asahigh-schooler,myonlyknowledgeofBotoxwasthatitwasthethingthatpeopleusetostopagingandpreventwrinklesfromdeveloping.Interestinglyasafourth-yearmedicalstudent,soon-to-beaphysician,manyofmyclassmatesnowsharethesameunderstandingofwhatBotoxisusedforasIdidbackinhighschool.Icanalsoechothefactthathyperhidrosiswasnevermentionedonceinourmedicalschoolcurriculum.SomydadaskedmeifIwouldbeinterestedinseeingthisdoctorinSt.Louis,andconsideringaBotoxtreatmenttohelpwithsweating.Tothatpoint,Ihadneverapproachedanyphysicianaboutthis“problem”thatdidn’tevenhaveanameordiagnosis.Unaware

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thatitwasactuallyamedicalcondition,Iwentoutonalimbandagreed.OneFridaymorning,wedrovesixhourstoSt.LouisfromCincinnatiwhereImetDr.Glaserforthefirsttime.ItoldhermystoryandshehadsomuchunderstandingandcompassionforwhatIwasgoingthrough.Sheagreedthissoundedlikeaconditioncalledhyperhidrosis,andofferedtotreatmewithBotoxgiventhatIdidn’tfindmuchreliefwiththetopicalwipes.Myvariantofhyperhidrosisiscraniofacial,meaningit’smyfaceandheadthatsweatexcessively.Idonothaveissueswithunderarm,handorfeetsweatingexcessively,whichisextremelydebilitatingtoothers.Thefocusofmyissueisthatyourfaceisthefirstthingthatpeopleseewhentheymeetyou,andit'sthethingthattheyrememberyouby.IsatontheexamtableandDr.Glaserturnedupthetemperatureintheroom.AndalmostinstantaneouslyIbegantosweat.SosheobservedwhereIwassweatingfrom,andfocusedhertreatmentonthoseareas.IwasrepeatedlystuckbyaneedastheBotoxwasinjected.Thefeelingofbeingstucknearly100timessoundscrazytodowillingly,butifitwouldproviderelief,Iwaswillingtodojustaboutanything.Afewthousanddollarslater,wegotbackinthecaranddrovebacktoCincinnati.Ididn’tfeelanydifferenceatfirstandwasunsurehowIwouldknowiftheBotoxwasevenworking.Withinjustafewdays,IbegantonoticeIwasn’tsweatinginsituationswhereIusedtobesweating.Andsituationswhereitwascompletelynormaltobesweating,forexample,playingsports,thesweatingwassimilartoeveryoneelse.Afteryearsoffeelinglikemybodyhadabrokenthermostat,Ifinallyfeltnormal.Iwasincrediblyrelievedtofindatreatmentthatwouldworkforme.Itisgreatthatcompanieshavedevelopedprescription-strengthantiperspirants,butthesearedesignedforuseintheunderarmonly.Notonyourfaceorinyourscalp.Andifyouhavehair,likeme,itisreallydifficulttoapplyanantiperspiranttoyourscalp.Iwassoencouragedthatthistreatmentworkedsowell,buttheeffectsstartedtowaneatabout4½months.IfoundmyselfrightbackwhereIwasbeforeIgotmyfirsttreatment.Whycan’tIjustgogetanothertreatment?Ohyeah,theclosestdoctorisa6-hourdrivesoitsnotveryaccessibleanditcostsafewthousanddollarsbecauseit’spaidout-of-pocketsinceinsurancedidn’tcoveritatthetime.So,it’snotaffordable.Thatwasconvincingenough,andIwasfortunatetohavehadthosefewmonthsoffeelingnormalandhavingreliefsoIfacetherealitythatIwouldhavetolivewiththisconditionthatIatleastnowhaveanamefor.Forthenextfewyears,Iusedacombinationofatleasttwotopicalwipesorgelsatleastonceaweek.IfeltthattheadditiveeffectofusingaSweatBlockwipebeforegoingtobedandusing3BFaceSaverGelwouldgivemesomelayerofrelief,butnowherenearaseffectiveastheBotox.RightbeforegraduatingcollegeasIwasabouttobeinterviewingforjobs,whichIwasterrifiedaboutdoing,mydadagreedtopayforonemoretreatmentbyDr.GlaserifIwasupforit.ThedrivefromNashvilletoSt.LouiswasshorterthanfromCincinnati,butitwasstillgoingtobeatrek.Thatparticulartreatmentwasincrediblyworthwhilebecauseitallowedmetogooffandconfidentlyinterviewincitiesoraroundthecountryforjobswithoutthefearofbeingjudgedbythesweatingeffectonmypersonalappearance.AftergettingajobinAtlantaandsubsequentlybeingacceptedintomedicalschool,IfoundoutthatseeingadermatologistintheStateofGeorgiaisthesameasseeingaprimarycarephysicianinGeorgia.Noreferralisrequired.AssoonasIfoundoutaboutthis,IlookedupdermatologistsinAtlantaontheInternationalHyperhidrosisSocietywebsiteandcameacrossDr.Rice.MyinitialconsultationwithDr.RicewasextremelycomfortableandIsharedmyjourneywithhyperhidrosisagainandDr.Ricewasincrediblyunderstanding.EspeciallyknowingthatIwasinthethroesofmedicalschoolatthetime.SinceBotoxworkedinthepastforme,shewaswillingtooffermethattreatmentwhichisnowcoveredbyinsurancewithonlya$30copayforthedrugitself.UntilIcouldgetinforthatfirsttreatment,sheofferedmeanoralmedicationthatwouldhelppreventallsecretoryglandsinthebodyfrombeingoveractive.Thedownsidefromthisisthatitdriesyououtglobally.So

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justbecauseyoudon’tsweatasmuch,youalsowalkaroundwithadrymouthlikeIamrightnow.Sideeffectslikethismaybeanannoyance,butmyapproachisstilljusttoacceptthemifIamprovidedrelief.Ideally,somedaytherewillbeatreatmentthat’saseffectiveasBotox,butwithouttherepeatedneedlesticks.Somethingthatdoesn’trequiredailyapplicationlikerememberingtotakeapillorusingwipes.Anddoesn’thavethesystemicsideeffectslikethepill.Somethingthatallpatientswithhyperhidrosiscanuseintheirvariableapplications.Notjusttreatmentsfocusedontheunderarms.TheidealsolutionIenvisionatthismomentisaBotoxwipethatonlyneedstobeappliedeveryfewweeksormonths.And,finally,atreatmentthatiscoveredbyinsurance,iswidelyaccessibletoallpatients,anddoesn’tcostanarmandalegwouldallmakeadifference,too.Atleastfornowthere’sastrongcommunityofindividualsthatgetwhatweareexperiencingandaremakingthebestofthesituation.Individually,wecanhavehope,buttogetherwecancreatechange.Thankyou.

AngelaBallard:Thankyou,Eric.You’regoingtomakeaveryfinephysician.And,Michelle…

Michelle(Panelist):Thankyou.SoasIbegin,Iseethatthereisanemptytablerightinfrontofme,andIwouldinviteanybodywhodoesn’thavehyperhidrosis,ifyou’dlikethefullexperience,tocomedownandsitinthe‘splashzone.’So,IhavehyperhidrosisonmyhandsandifIgesture,Icanflingsweattothattable.Soifyou’reinterested,feelfree.So,mynameisMichelle.IamalitigationattorneyoutofPennsylvania.Typicallythat’snotthefirstthingIstartoffsayingwhenI’minaroomfullofdoctors.Becauseimmediatelythethoughtfromthedoctor’sperspectiveis,“Well,doyoupracticemalpractice?DoIhavetoworryaboutyousuingme?”Anditcreateskindofanawkwarddoctor-patientrelationship,butyougetthesameimpactwhenyouwalkintoadoctor’sappointmentforthefirsttimeandyousay“Ihavehyperhidrosis,”andthedoctordoesn’tknowthatterm,hasn’thadapatientthathashyperhidrosisinthepast,andyousaytothem,“Well,IwantyoutotreatmewithBotoxandstabmeinthehandahundredtimes.”Thedoctorpanics,andreallyweneedtoincreaseeducation,increasetrainingsothatthatsituationisn’tarisingforpeoplewithhyperhidrosis.But,thepatient,themindsetthatthey’rebringingintothatroomisverydifferentthanthedoctorwhoistheretotreatthepatient.Lisasaiditthepeopleinthisroomwithhyperhidrosisaretheexperts,andwhenthepatientistheexpertratherthanthedoctor,that’sadifficultsituation.Peoplewithhyperhidrosisaredesperatefortreatment.Wearedesperatetofindrelief.IwastalkingtoagrouplastnightwhoImetforthefirsttime,whoalsohavehyperhidrosis,andIposedaquestiontothemandI’mgoingtoposethisquestiontotheindividualsintheroomrightnowthathavehyperhidrosis.Thequestionis,ifIhadatreatmentavailablerightnowthatwouldstopyourhyperhidrosis,stopyoursymptomspermanently,butthecatchwasyouhadtocutoffyourpinkyfinger,wouldyoudoit?Raiseyourhandifyouwould.Takealookaroundtheroom.It’scrazyifonepersonwouldhavesaid“yes”tothatquestion.Buthereweare,there’sdozensofpeoplethatwouldbewillingtogiveupafingertofindatreatment,aneffectivetreatmentforthiscondition.That’swhatweneed,weneedsomethingthatwillhelpeverybodygetthroughthiscondition,livetheirlives,butwithouttheneedforhavingtocutoffafingertodothat.Iwanttotalkterminology,andI’mnottalkingaboutmedicalterminology.I’mtalkingabouteverydaytermsthatpeoplewithhyperhidrosisunderstand.Forexample,howdoyoudescribesomebodywithhyperhidrosis?Doesthatpersonlivewithhyperhidrosisordoesthatpersonsufferwithhyperhidrosis?Suffer,exactly.SoIhavefairskin,Ihavefreckles.Ilivewithfrecklesbecausethatdoesn’taffectmyday-to-daylife.Itdoesn’taffectwhenIgetinthecarandhavetodrivefrompointAtopointB.Itdoesn’taffectwhenIhavetoshakesomeone’shand.Itdoesn’taffectmyday-to-dayliving.Peoplewithhyperhidrosisaresuffering.Ineverythingtheydo.Youheardfromsomanypeople,andIthinkeveryoneinthisroomcouldrelateto

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thosestories.Wetrulyaresufferingwithhyperhidrosis.Andit’sbecausethere’snotenoughtreatmentsavailable,thereisnoinsurancecoverageavailable.Wereallyneedtomakeachangeandgetthehelpthatisdesperatelyneeded.Anothertermis“manage”andthat’ssomewhereinbetweenlivingwithaconditionandsufferingwithacondition,ismanagingacondition.Mydadhasdiabetes,andhemanageshisdiabetes.Hetakesoralmedicationsandreallyforday-to-day,heisnotimpactedbyhiscondition.He’sabletomanageit.There’sanothertermthat’ssimilartomanage,andthat’s“makedo”.Ithinkmostofthehyperhidrosistreatmentsavailablereallyallowusjusttomakedowiththeconditionratherthanactuallymanagethecondition.Botoxistemporary.IhavehadBotoxacoupleoftimes.It’spainful,it’sexpensive,it’snotcoveredbyinsuranceandreallythatisatreatmentthat’sallowingpeopletomakedowiththeconditionratherthanmanageitbecauseit’scost-prohibitive.Peoplehavetotravelfardistancestohaveaccesstoit.Theiontophoresistreatment,that’sanotherkindofmakedotreatmentthatisavailable.And,it’sgreatthatthesetreatmentsareavailable.Thatthere’ssomethingouttheresothatwe’renotsuffering.Atleastwearemakingdo.But,thoseofyouthathavetheabilitytoworkontheseproducts,tosupporttheresearch,pleasepushtheproductsfrommakedotomanage.Becausethat’sreallywhatwe’reaskingforistobeabletomanageinourday-to-daylives.Theiontophoresistreatmentyoureallyhavetohavethetimeinyourdaytositdownanddo20-minutespersession,andit’sreallylongerthanthatbecauseyouhave2handsandyoucan’tdo2handsatthesametimebecauseyouhavetohaveafreehandtoworktheequipment.So,itturnsintoa40-minuteprocedureorlongerthanthat.And,it’smultipletimesperweek.Peoplereallydon’thavethattimeintheirschedulesothat’sanotheroptionthatisjusthelpingpeoplemakedoratherthanmanagethecondition.AnotherinterestingresponseI’vegottenfromdoctorsis,“Well,Iunderstandyouhavethiscondition,butit’sreallynotthatbad.Youdon’thavecancer,you’renotdying.”Well,nooneinthisroomissayingthatthey’redyingfromhyperhidrosis.But,howisthatanappropriateresponsewhenIsaythatthisisthemedicalconditionIhave?IfIwalkedintoadoctor’sofficeandsaid,“Ihaveacne”or“Ihaveallergies,”theresponsewouldnotbe,“Well,it’sgreatyoudon’thavecancer.”Whyisthatanappropriateresponsewhensomebodyissaying,“Ihavehyperhidrosis”?Weareseekingoutsomethingtohelpusmanagethiscondition,andgetawayfromsufferingwiththiscondition.Intermsofimpact,Ihavehadvarioustreatments,butIamstillimpactedbymyhyperhidrosis.Yesterday,forexample,wehadameetandgreetwherewewereabletointeractwithsomeoftheotherindividualsthatareherewithhyperhidrosis.Wewerehereforacoupleofhoursandafterthat,IwentuptomyhotelroomandIhadawetstainundermyshirt.Undermyarm.Ihavehyperhidrosisundermyarms,onmyhandsandonmyfeet.So,Iwasscheduledtomeetupwithmycousinlaterthatevening.MycousinisinVirginia,andIthoughtgreatopportunity.Ihavealittlebitoftime,andIcanmeetupwithmycousin.So,IwentuptotheroomandIgrabbedthehairdryer,andItookmysweateroffandIusedthehairdryertodrythewetspotundermyarm.Ididn’thaveachangeofclothes.Cominginfromoutoftown,Ididn’thaveanythingelseIcouldusesoIwasforcedtousethehairdryertogetthroughmyday,andmanageinthatsituation.Imetupwithmycousinandhesaid,“Oh,whatareyoudoingintown?”And,Isaid“Oh,I’mhereforaconference.”And,hesays,“Oh,wellwhatkindofconference?”AndIsaid,“Oh,it’saworkthing.”Inthatsituation,Iliedtomycousinratherthantellinghimthetruth.Ratherthansaying,thisiswhatI’mhereforandhavingtoexplaintomycousinthatIsufferfromthisconditionandexplaintohimwhatitwas,Iliedtomyownfamilymember.SohereIamtalkingtoagroupofstrangersmorecomfortableexplainingtoyouguyswhatI’mgoingthrough.AndIcouldn’ttellmyownfamilymemberthatthiswaswhyIwasdownherefortheweekend.MyjourneystartedwhenIwasachild,beforeIknewthetermhyperhidrosis.Beforemostdoctorsknewthetermhyperhidrosis.Doctorafterdoctor,I

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wentto.Iwastellingthemwhatthetermwas.Iwastellingthemaboutthecondition.IbecameamemberoftheInternationalHyperhidrosisSocietyveryearlyon,andhavebeenblownawaybytheresearchandtheeffortsthey’vegonetotopromotepeoplewiththisconditionandthechangesthatneedtobemade.Themostcommontreatmentoptionthatdidn’tworkforme,thatIwasgivenfromdoctorswas,“Well,you’reyoungwhydon’tyouwaitandseeifyou’llgrowoutofit?”Well,I’manadultnow,andI’mstillwaitingtogrowoutofit.Thattreatmentdidnotwork.AnothertreatmentthatIkindofcameupwithmyown,wasencouragedbydoctorstouse,waswhitecottongloves.EverydaywhenIcamehomefromschoolandhadtodohomework,IwouldputonmywhitecottonglovessothatIcoulduseapencilandnotsweatthroughthepieceofpaperandgetmyhomeworkdone.Theproblemiswithwhitecottongloves,youcan’tgotoschoolasachildandwearglovesalldaylong.It’sjustnotsociallyacceptable.Ican’tgotoworkandwearwhitecottonglovesalldaylong.It’snotsociallyacceptable.Sothistreatment,forme,justhelpsmemakedo.Itdidn’treallyhelpmemanagemysymptoms.Itriedallsortsoftopicalcreamsandointments,andvariousdifferentinstructionsthatthedoctorsgave.Putitonatnight,you’renotgoingtosweatasmuchatnight,wrapyourhandsinsaranwrapafteryouputthecreamonandgotosleeplikethat.Itriedallofthatunsuccessfully.IdidhaveBotoxtwiceundermyarms,onceinmyhands.Again,it’sagreatoptionifyoucanaffordit,ifyoucanmaintainit.Forme,it’soneofthosethingsthatisforspecialoccasions.WhenIwasplanningawedding,itwasfactoredintomyweddingbudgettogetBotoxinjectionsonmyhandssothatIcouldreallygetthroughthatdayandenjoythatday.Butit’snotsomethingthatIcanaffordtodoonaregularbasis.IthenmovedontomiraDry.IhavehadtwotreatmentsofmiraDry,andlikethedoctorsaidearlier,Ihaveseenabout80%reduction.AnothertreatmentthatIhaveattemptedandthat’snotdrinkingawholelotofwater.And,that’snotagoodthingbecauseyou’redehydratingyourself.AcoupleofyearsagoIgotakidneystone,andnowlookingback,IwonderdidIdothattomyself?SotowrapitupIwouldsay,please,pleasehelpusfindsolutionstomanagethiscondition.Thankyou.

AngelaBallard:Thankyou,Michelle.I’vebeenimmersedinhyperhidrosisforalongtime,butIlearnedalotofnewthings.So,thankyousomuch.And,nowMegan.

Megan(Panelist):Angela,you’vebeenimmersed.Hieveryone,mynameisMegan.Iamaregisterednurse,I’vebeenpracticingabout10years.Isufferfromhyperhidrosisofthepalms,andthesolesofmyfeet.Also,axillarytoanextent.Althoughthat’smoremanageableforme.We’reupheretotalkabouttreatment.Ithinkforallofusthatsuffer,treatmentsandimpactarekindofinextricable.There’snowaytotalkaboutonewithouttalkingabouttheother.Onethingthatstruckmeaswe’vebeenherethisweekendandI’vespokenwithotherpeoplehereisthatIthinkforthoseofuswhohadonsetofthisconditionwhenwereinfants,frombirth,aschildren,andalsothoseofuswhohavestartedtosufferlaterinlife,isthatthisdiseaseimpairspeople’sabilitytodevelopashumanbeings.Ithinkoftheprocessofearlychildhooddevelopmentandhowpartofthatprocesswhenyou’reachild,youlearntointeractwiththeworldthroughyourhands.Facialrecognitionissuchahugepartofchildhooddevelopment.Andwhenthosethingsareimpaired,asachild,andevenasanadult,itprofoundlyaffectshowyouinteractwiththeworld.Howyouperceiveyourself,howyouperceivetheworldaroundyou.And,someofthephysicianstalkedabouthowaccessibleandeffectivetreatmentforhyperhidrosisreallyinspiresself-confidenceanddevelopsself-confidenceinpeople.And,Ithinkevenkindoffromaphilosophicalstandpoint,evenpriortothatself-confidence,weallashumanbeingsneedtohavefeelingsofcontrolandcontroloverourownbodies.So,again,accesstothat,toeffectivetreatmenthelpsusalldevelopashumanbeingsandbecomemoreactualizedashumanbeings.So,alongthose

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lines,likeIsaidIhavepalmarandplantarhyperhidrosis.Andwhatthatmeansonaday-to-daybasis,aminute-to-minutebasis,isthatIamunabletoreliablygrasporholdanyobject.It’sprettyexistential.Iamunabletoreliablygrasporholdanyobjectinmyhandsforanyperiodoftime.And,thisisminutes.So,imaginehavingtotouchandthenwithdrawfromeverythingthatyoutouchorholdforfearofdestroyingit.Whetherthatbepaper,whetheryourcellphone,alaptopcomputer,droppingitaswe’veheard.Concernsaboutdroppingbabies.Holdingpets.Fearofoffendingordisgustinganyoneyouinteractwith.And,aswe’vealltalkedabout,thinkabouttheeffectonpeople’smentalhealththatbrings.Thinkaboutthesadnessandisolationthatcomesfromthat.And,again,whenwe’retalkingabouttreatment.Itsoundslikeweneedtobediscussingmentalhealthtreatment,treatmentfordepression,treatmentforanxietybecauseit’sinterconnected.Thesephotoshere,theoneonyourrightisactuallymyhandanditispost-treatmentwithBotoxinjections.Botoxinjectionsinmyhandsare,I’vetriedavarietyoftreatmentslikewe’vediscussed,thingslikesystemicanticholinergicmedication,topicalmedication.Botoxisthethingthathasbeenthemosteffectiveforme.It’sjustprimarilyamatterofgettingaccesstothattreatmentandhavingitbecoveredbyinsurance.

LisaPieretti:Megan,I’msosorry,butwe’rerunningreallyshortontime.Wehave45-minutesleftinourentireday.Doyouwanttosaywhyyoulikethispicture?

Megan(Panelist):Ilovethispicture.ThisisaphotothatItookatoneofthecontinuingeducationseminarsorconferencesprovidedbytheInternationalHyperhidrosisSociety.ThisinparticularwasheldinScottsdale,Arizona,andIwasgraciouslyinvitedbyLisatoattendandtoparticipateandtoreceivetreatment.OnthehouseprovidedbytheInternationalHyperhidrosisSociety.And,thispictureissymbolictomebecauseitrepresentsaccesstotreatment,itrepresentsthewaytreatmentshouldbeforusall.And,itwasjustbeautiful.KindofalsoIguessshowsmysenseofhumor.Justherewasthishugesilvercontainerfullofallthesepre-filledBotoxsyringesthatwerejustaccessibletothesedoctorsthatwerehereinthislocationtolearnhowtoprovidetreatmenttopatients.It’saveryhappypictureforme.IfImaysayonemorething,Iknowwe’regoingover.Whenwewereaskedtotalkaboutwhatsortofresearchanddevelopmentwewouldhopetoseefortreatmentforhyperhidrosis,Ihadaverydifficulttimeimaginingthat.FormeandIthinkforalotofus,it’sjustasmuchaboutaccessasitisthekindsoftreatment.Againfromapsychosocialperspective,youneedaccesstosomethingbeforeyoucanthinkcreativelyordeveloporinnovate,butIwouldspecificallyaskpleaseforresearchintotreatmentsmoreresearchintotreatmentsforareasotherareasofthebodythanaxillary.Axillaryissuperimportant,it’snolessimportantthananyotherfocalarea.But,inmyexperience,researchanddevelopmenthasfocusedprimarilyonaxillarytreatmentsandthenalsojustthatresearchbedonetocreatejustfortreatmentsforpalmarandplantarandotherbodyareastobedesignated.Botoxtobedesignatedason-labelvsoff-labelbecauseIthinkthatwillimproveinsurancecoverageofthesetreatments,whichisnecessary.

LisaPieretti:Thankyou,Megan.

AngelaBallard:Thankyou,Megan.Wendy,lookingforwardtohearingfromyou.

Wendy(Panelist):Youknow,it’shumblingbeingonastageandinaroomwitheveryone.I’vereallyenjoyedlisteningtoeveryone’sstories.Myinitialdiscoveryreallyislikemanythatyou’veheardtoday.Irememberbeinginkindergarten,sittingonthecarpetduringcircletime,oneofmyclassmatesnoticingmyhandwassweatingandproceededtolaughatmeandsharehisdiscoverywitheverybodyelse.Runningtothebackoftheroomwherethebathroomwas,lockingmyselfinthebathroomforhours

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becauseIknewthatmomentIwasdifferent.AndIcouldn’tcontrolit.Myjourneybeganinthelate70’s/early80’s.Atthatpoint,hyperhidrosiswasnotsomethinganybodyevertalkedabout.Mysister’sevenhereintheaudience,shesaidwenevertalkedaboutitasafamily.Ihavezeropicturesofmyselflikethepeopleonmypanel.Itwasn’tthatIwasashamed,Ijustdidn’twanttobedepictedasthatpersonbecauseI’mmorethanthat.I’mmorethanjustthepersonthatsweats.Andforthefirst20yearsofmylife,Ican’ttellyouhowmanydoctors’officesIwalkedinto.Iwasaveryverbalchild.Iknowyouprobablyfindthathardtobelieve,butIwasaveryverbalchild.And,Iwouldsay,“Hey,I’msweating.”AndIwasblownoff.Iwasdismissed,andyou’veheardthatalottoday.But,inmydoctor’sdefense,Idon’tthinkitwaspersonal.Itwasjustthatitwasn’tsomethingthattheytrulyhadtheeducationandknowledgetotheextentthatwedotoday.IthonestlywasnotuntilIwenttoapodiatristinmyareaandIwasgettingconsultationforbunionsurgeryofallthings.AndheheldmyfootinhishandandIrememberdistinctlywatchingmysweatdripdownhisglovedhand.AndIimmediately,likeyou’veheardfrommany,manypeople,startedtomakeapologiesforwhyIwassweating.“Mygosh,it’ssohotoutsidetoday.”BecauseIlivedinVirginiaBeach,youknowit’sabeachcommunity.So,Istartedmakingexcuses.Hewasthevery,veryfirstdoctorthatsaid,“Stop,youcan’tcontrolthis.”And,hegavemeanameformycondition.Thatveryfirstday,hestartedmeonDrysol.Itwasatopicaldryingagent,andIbrokeoutinhiveswithinaday.But,nowactuallyhavinganameformyconditionwhenthefirst20yearsofmylifeIneverdid.Istartedontheinternettoseewhatmyotheroptionswereoutthere.And,that’swhenIdiscoveredthattheFDAhadrecentlyclearedBotoxinjectionstotreatmycondition.So,IcalledmyinsurancecompanybecauseIneededtogetpriorauthorizationtoevengotoadermatologist,andthatwasaprocessinitself.And,whatIsaytopeopleisthestarswerealignedthedayIcalledmyinsurancecompanybecausetheonlydermatologistinmyareaacceptingmyinsurancewasPariserDermatology.WhenIcalledtheoffice,theonlydoctoravailabletoseemewithinashortwindowwasDr.David.ButwhenIwentonlineandsawthathewasthePresidentoftheBoardofInternationalHyperhidrosisSociety…IwasaschoolteacherandIstoodinmyclassroomandIdidahappydance.BecauseIsaidatthatmomentthatIwasgoingtothebestofthebest.Therewasnoonebetter.And,inmyopinion,therereallyisnoonebetter.Sorry,nooffensetoalloftheothersatthetable.And,whenIwalkedintohisofficethatday,hestartedmeoniontophoresiswhichyou’veseenpicturesof.Puttingyourhandssubmergedinsaltwater.Myconditionwasactuallysosevere,Iwouldcutmyhandanditwouldfillwithwater.Imaginethat,likeabowlIwoulddumpitanditwouldrefill.And,myshoeswouldfillwithwater.SowestartedoniontophoresisandIwasactuallyable,throughmyinsurance,togetthedeviceathome.But,here’sthething,youcan’ttravelwiththeiontophoresismachine.It’snotapracticaltreatment,andIdon’tcarehowpeoplesugarcoatit.Puttinghandsinwaterhookeduptoelectricityisjustnotthesmartestoftreatmentsoutthere.And,myconditionwassosevere.Itdidstopitsome,butIwouldstillhavebreakoutsessions.AndIhadtodoitasyou’vebeenhearingmultipletimeseveryweek.WewentthroughthechannelsofactuallygettingBotoxclearedtotreatmyconditionbecausebackintheearly90’s,insurancecompaniesreallyonlysawitusedforcosmeticreasons.And,IrememberonedayIwasinhisofficeandIwasgettingmyiontophoresistreatment.Hewalkedinandhesaid,“Hey”becauseIkneweveryoneintheofficewellbecauseIwasgoingtherethreetimesaweekandIwouldbringsnacksanditwouldbelikealittleparty.Andhesaid,“Hey,guesswhat?GoodMorningAmericacalledmethismorning.”Hesaid,“Howwouldyouliketogoonnationaltvandshareyourstorywiththeworld?”So,Iwas21-22,IwentonGMAandactuallysharedmegettingmyveryfirstBotoxinjectionswiththeworld.Togivehopetopeoplelikeusinthisroom.Iwouldgetaboutahundredshotsineverysinglehandbecauseliterallyforthoseofyouthatareinthe

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professionanddon’tknowwhattheydo,andbackinthedaytheyusedtogivemeanerveblock.Butnowtheydon’t,theysimplyputiceandthentheyinject.Theystartatthebaseandtheyliterallylineyourhandgoingtothetopsofyourfingersandinbetween.Ahundredshotseachhandandthenthirtyundereacharm.Thatlastedforabout6months,anditworkedreally,reallywell.But,IchangedjobsandwhenIgotmynewjobineducation.I’mnowinschooladministration,myinsurancenolongercoveredit.Itwas$1,000outofpocketforeach.$4,000total.And,Idon’tcarewhatjobyouhave,that’sjustnotanexpensepeoplecanmusterevery6months.So,IrememberbeinginDr.David’sofficerecentlyandwewerecatchingup.And,hesaid,“Hey,guesswhat?There’sanewmedicationouttherecalledRobinul.”It’sanoralmedicationthatyoucankindofregulate.Youcantakefrom1pillto3-4pills,anditessentiallyisadryingagent.Itdriesyouout.And,whenhesaysitdriesyouout,itdriesyouout,youhavecottonmouth.Myeyesaredry.But,here’sthething,italsodriesmymuscles.Igetnolessthan15cripplingcharleyhorselegcrampsatnighttothepointwhereIcan’tlayinbedandjustworkitout.Ihavetophysicallywalktheroom.So,tosaythatIcan’trememberthelasttimeIhadagoodnight’ssleepistrulykindofanunderstatement.ItakeGatorade,magnesium,potassiumsupplementsandnoneofthathelps.Andyetlastnight,wewereatoursocialandIwastalkingtoDr.DavidandIsaid,“Hey,guesswhat?”Becausehesaid,“Hey,Ihaven’tseenyouinawhile.”Ithinkthatwashowourconversationstarted.AndIsaid,“You’rerightbecauseguesswhat,forthefirsttimein44years,IcantellyouI’msweat-free.”AndIsaid,“However,Ihavethesecrazyside-effects”andhejustlookedatmeandIsaid,“Iknow”Isaid,“Inevercamebacktoyourofficetotellyou”andIsaid,“Becausehere’swhy,I’msweatfree.”AndIsaythistoyoualltodaythatareoutthere.Assufferers,weshouldn’thavetosaytoyouI’llsuffertheside-effectbecauseInolongerhavethis.Theretruly,trulyhastobeabetteransweroutthere.AndIwanttojustconcludebysayingthis:lastnightinourmeetandgreet,wedidtheseamazingpostersthatIhopeyouhadachancetoseewhenyoucameinbecauseitgivesyouaninsidelookastowhatwethinkandwhatwefeel.AndIwantthosewordsonthoseposterstoresonatewithyouguys.BecausewhatIwantyoualltorememberiseverybodyinthisroomandeverybodywatchingonline,we’renotjustanumber.We’renotjust3.5million,wearepeople,wehavevoiceandthatvoiceisloud.Butit’snotloudjustforus,it’sequallyasloudmoreimportantlyforthechildrenandthefuturegenerationsthataregettingreadytobegintheirdiscoveryandtreatmentjourney.And,I’mhoping,myhopeisthatandthat’swhyIputthatquoteupthereabouthope.MyhopeisthatconversationsliketodayreallypavetheroadalittlebitsmootherthantheonethatIhadtopersonallytravelandonesthatyou’veheardfrommycolleaguestraveled.Sothatotherpeoplenevereverhavetoquestiontheirself-worthandIcan’ttellyouhowmanytimesgrowingupIquestionedifIwasworthit.SoIsaytoyouandmoreimportantly,Ibegyou,youallarethevoice,youallarethevoice,butmostimportantly,you’rethehopeforallofus.So,thankyou.

AngelaBallard:Thankyou,Wendy,forsharingyourvoice.It’sreallyimportanttohear.Sophia?

Sophia(Panelist):Thankyou,Angela.MynameisSophia.I’mfromVirginia.Iwasaneducator,IwasineducationforalotofyearsandIrecently…well,nottoorecently,Ibecameabusinessownerandyouknow,it’sjustI’mreallysoexcitedtobehereandit’sbeenamazinghearingallofyourstories.IknowthateverytimeIhearsomeonespeak,I’mlike,“Yep,uhhuh,that’sme.Icanrelatetothat.”AndIthinkreallyhavingthecouragetoshareourstoriesisempowering.AndIthinkthatweneedtocontinuetoshareourstoriesanduseourvoicesbecause,quitefrankly,there’sjustnotenoughawareness.It’sshockingtomethatdoctor’sofficesandinmedicalschools,theydon’tknowwhathyperhidrosisis.And,I’veheardsomanypeoplesaytheytrytohideit.That’ssomethingIdidmywholelife.Triedto

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hideit.Hideitfrommylovedones,hideitfromtherestoftheworld.And,itdoesimpactyoupsychologicallywhenyou’retryingtohide.And,justthereactionsomanypeoplehavesharedwhatreactionstheygetwhentheywouldshakesomeone’shandandthenthatpersonwouldwipetheirsweatoff.It’sahorriblefeelinginsidetoknowthatyougrosssomeoneout.They’rejustthinking“Eew.”SoIthinkbytalkingaboutit,raisingawarenessandusingourvoicesandbeingcourageoustoshareisreallywhat’sgoingtobringaboutchange.Weallhavestories,butI’mjustgoingtoshareonethatreallysits,reallystillhurtsmyheart.Andthatwaswhenmysonwasbornin1999.Itwasthewintertime,andhewasborn6lbsandIbroughthimhomeandIhavepalmarhyperhidrosis.Sopalmar,plantarandalittlebitofaxillaryaswellandbackthenIwas,Ididn’tknowIhadhyperhidrosis.IjustthoughtIwasweird,it’sverystrange,therewasnooneelseintheworldlikeme.AndsohereIamathome,anewhome,withmylittleteeny6lbbaby.It’swintertimeandeverytimeIheldhim,Iwouldsoakhim.So,itwasn’tjustthatmyhyperhidrosiswasaffectingme,itwasnowaffectingmychildbecauseIwasnotgonnaleavethehousewhenit’s20degreesoutsidewitha6lbbabywhowasnowwet.Frommyhands.Andthatjustmademefeelevenmorealone.And,itjustmademefeelreallyhorrible.Evenhisblankets,Iwouldsoakthrougheverythingjustholdinghim.Iwasreallyhappywhensummercamearound,andIcouldgooutandleavethehouse.Anyway,soitwasabout,Iwasinmy30’swhenIfinallywenttoanewdoctor.Iwasgoingtoadoctoranditwasforprobablyacoldorsinusesorsomething.Andyouknowthedoctorwenttogoshakemyhand,andthisisnormallywhenIwouldsaymywhitelielikeIheardsomeotherpeoplesay,“OhI’msorrymyhandsarewet,Ijustwashedmyhands.”Thatwasmygo-tosaying.Well,forwhateverreasonthatday,Ijustcouldn’t.IblurtedoutthetruthandIsaid,“I’msorrymyhandsarewet,andIjustdon’tknowwhy.”And,thedoctorlookedatmeandhesaid,“Oh,youhavehyperhidrosis.”And,inthatmoment,mywholelifechanged.Icouldnotbelievethiswasamedicalcondition.Icouldnotbelievethereweretreatmentoptions,there’sanameforit.And,mostimportantly,IjustwassohappythatIwasn’talone.Therewereotherpeoplelikeme,andthatwasareallywowmomentforme.So,Ibeganseekingtreatmentoptionsandexploringallofthosethings.Istartedintheusualway,ItriedDrysol,thetopicalthatwetalkedabout.Itdidn’tdomuchforme.Itreallydidn’t,itwasasmallchange,butnothingsignificantatall.Itriedoralmedication,whichlikeWendy,it’sbeensuccessfulforyou.Igotdrymouthandstillsweatyhands,sothatdidnotreallydoitforme.And,soI’vedoneBotoxinjections,whichIdobelieveworksverywell.I’veheardpeoplesayitdoesn’t,andinthoseinstanceswhentheysayitdoesn’twork,Ibelieveit’sbecausetheyneedtogobacktothedoctorforafollowup,dothestarchiodinetestbecauseifonelittlepartofyourhandhasnotbeentreated,thenthesweatfromthatregionisgonnamigrateandit’sgonnaseemlikeitdidn’twork.But,Botoxdoeswork.MyissuewithBotoxisexpensive.Goodluckgettingitcoveredunderinsurance,andyouhavetodoitsofrequently.Butitdoeswork.CurrentlyImanagewithiontophoresis,andagainI’veheardpeoplesaythatitdoesn’twork.But,itdoes,youjusthavetodoit3timesaweekfor3weeks.Youhavetostickwithitweekly,andyouhavetogetthedeviceuptotheminimumtherapeuticlevel,whichIbelieveisa12.Myissuewiththatisthetimethatittakes,thediscomfortthatitis,andgoodlucktravelingwiththatthinginyoursuitcase.CanyouimaginewhatTSAwouldthinkseeingthatdeviceinyoursuitcase?So,anyway,Ireallywouldliketoseegoingforwardinthefuture,treatmentthat’saccessible,affordable,justlikeeveryoneelse,that’ssafeandthat’salittlemorepermanenttohelpusmanageourconditions.So,thankyouforyourtime.

AngelaBallard:Thankyoueverybody.So,forouropendiscussion,Lisa.

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LisaPieretti:We’rerunningsolongontime,weprobablyhaveabout5minutesforopendiscussion.So,wemightwanttofocusonthefuturesinceIthinkourhistorieswereverysimilar.

AngelaBallard:So,let’scuttothechase.Whatdoyouwantandneedforthefuture?So,let’sseearowofhands.Isthereanyonewhohasnothadachancetospeakatallyetmaybe?Iwanttogiveanewsomeoneachancewhodidn’tspeakyet,I’msosorry.

AudienceMember:I’msorry,butIhaven’theardanyonespeakaboutETS.

AngelaBallard:You’reright,wehavenothadachancetotalkaboutthat.Areyougoingtotouchonthatwithustoday?

AudienceMember:Yes,Ihadit.Iwasthatdesperate,andI’moneofthe3.5%thatendedupwithseverecompensatoryhyperhidrosis.Ihavefiveotherchronic,incurablediseases.And,Icantellyou,Ihavesufferedmywholelifefromonethingoranotherandtheseareseriousconditions.ThatmyhyperhidrosisisthemostdebilitatingdiseaseoutofallofthemthatIhave.Ihavebeenoffereddisabilitybyjustabouteverykindofdoctoryoucanimagine.But,Ihaverefused.Ihaverefused,Ihavefoughtback.Ihavefoughteverydayofmylife.And,time?I’monlyallowedfourhoursadaytoactuallylive.TherestofitiscompletelyimmersedinmanagingmylifearoundthediseasesthatIhave.Hyperhidrosisisnotbothersome,itisdebilitating.

AngelaBallard:ifyoucouldsumupveryquicklyinafewwords,whatyoucouldforeseeasapositivefutureintreatmentforyou?

AudienceMember:WhatIseeasapositivefuture,andtheonethatwillhavethegreatestimpactin/withtheFDAandexcuseme,Lisa,I’mgoingtostealthis.Yougavethistome.ShesaidthatifETSwereapill,thattheFDAwouldnever,neverapproveit.

AngelaBallard:Thosearepowerfulwords.

AudienceMember:Lisasaidthat,andIjustwanttosaytoansweryourquestion,educate,educate,educate.GetthewordoutbecauseIdidn’thavethatinformationandnow,there’snohopeforme.But,Ihopetherewillbeforpeopleinthefuture.

AngelaBallard:Well,we’reallheretoeducateandsupporteachother,soI’mgladthatyouwereabletoshare.Thankyou.Let’shearsomemoreaboutwhatweneed,whataremeaningfulendpoints.

AudienceMember:Ithinkthatalotofthetreatmentsthatareoutthere,I’vetriedeverythingexceptsurgeryandnothingworksforme.And,Ithinkthatalotofthetreatmentsarefocusingjustonturningoffthesweat.But,Iwonderifthere’sanythingcomingthatwouldbemoreofaninternaltreatment.Somethingthat’sinourbrainorwhatevermakesithappen.Ifthere’sanytreatmentsthatarefocusingonthataspectofit.

AngelaBallard:That’sagreatpoint,andIhopewecaninspiresomecreativityhere.Whoelsewouldliketotalkabouthopeforthefuture?

AudienceMember:Hi,Iwouldwanttoseemoretreatment,moreresearch,moreawareness,andmoreeducation.

AngelaBallard:Moreisgood.

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AudienceMember:Hi.Iactually,I’vegonethroughhyperhidrosismywholelife,anddidn’tstartreallygettingintoknowingabouttheconditionuntilIparticipatedinthisorganization.So,I’mverythankfulthatthereisaplatformnow,andIhaveactuallytriedBotoxthroughthisorganization,sothatwasverysuccessfulformeforafewmonths.And,fortreatment,IthinkI’vedonesomeresearchandnoticingthatit’spartofyournervoussystem,soIdon’tknowifthereissomethingthatcanbefocusedonthat.I’vetriedsomethingcalledNerveTonictoseeifthatcouldhelptheover-activesweatglandsthat’skindoftransferredfromyournervoussystem,soIdon’tknowthatmightwork.But,it’satopicalkindofsolution,andthenI’vetriedusingtheantiperspirantsonmyhandsatnight.So,Ithinkeducationandhavingphysiciansbemoreawareofthiswhenyoudogotoyourdoctor’soffices,whoknowthisexistsandobviouslythere’sanameforitnow.So,justfocusingoneducatingandraisingawarenessthroughthat.

AngelaBallard:Thankyousomuch.Lisa,dowehavetimeforonemore?Ok,onemoreabouttreatmentsforthefuture?

AudienceMember:Sorry,notreallytreatments.Mymajorconcerntodayismylittleboyhere,eightmonths,andIjustdon’twanthimtohavetosufferthroughthislikeeveryoneelseheretoday.

AudienceMember:Wedon’twanthimtoeither.

AngelaBallard:Thanks.It’sgoodtohaveasymbolofthefuturewithus.Thankyousomuch.Oh,wehaveonemore.

Audiencemember:Hi,I’mamodelandasecond-yearlawstudent.Forthefuture,Iwoulddefinitelylovetoseetreatmentsthathelpthepatients,notonlymentally,butalsophysicallybecauseI’veactuallyruinedgarmentsbecauseIwasdrippingwetfromdifferentareasofmybody.Andmostofthesearesampledesignsandeverythingwhereyoucan’tmakethatagain.And,itissupposedtocostathousandorsodollarsforyouknow,theclient.SoIreally,reallyhopethatsomethingcanbedonetohelpinthisparticularareabecausewereallyaresuffering.Thankyou.

AngelaBallard:Thankyoutoeveryonewhosharedtoday.Wecouldn’tbeherewithoutyou.And,nowwe’regoingtowelcomeDr.Pariserbacktothestage.He’sgoingtosharesomeclosingremarks.

Dr.Pariser:Sothishasbeenagreat,greatmorning.Angela,Iwanttothankyouforthegreatfacilitationandmoderation.Youdidagreatjobwiththat.Wecouldn’tletthisdaygowithoutthankingLisa.NotonlydidLisaarrangethisgreatevent,butIgottatellyou,shehasbeentheheartandsouloftheInternationalHyperhidrosisSocietysinceforever,andweneedtogiveherastandingovation.

-Applause-

Dr.Pariser:Ok,wow.Weheardalottodayfromourexperts.Andyouguysandgalscertainlyareexpertsinthis.Andwerealizethatit’ssometimesverydifficultforyoutoarticulateit.Andnotreallytheyouinthisroombecauseyou’veallcomeout,ok.Youhaveallcomeout.It’sallofourfriendswhohavenot.It’sthosehalfofthosepeoplewhohavehyperhidrosisthathavenevertalkedtoanyoneaboutitbecauseofallthereasonswe’vesaid.They’reembarrassed,theydidn’tknowtherewasanythingtheycoulddoaboutaboutit,theydidn’tknowitwasamedicalcondition.And,it’sdifficultforthattohappen.So,whatshouldbethetargetfortreatmentofthiscondition?Whatshouldweasphysicians,whatshouldtheinnovatorsasdevelopers,whatshouldtheregulatorslookforasthetarget

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oftreatmentswithpeople?And,Iwouldaskyouthisquestion,yourownindividualtargets.Whatwouldyourdaybeliketodayifyoudidn’thaveexcessivesweating?That’syourtargetandeverybodyisgoingtohavealittledifferentone.Butwhenwedeveloptreatmentsanddrugsanddevices,wehavetoboilthisdownintosomethingmeasurable.And,whathashappenedashasbeenrightfullypointedoutisthatalloftheapprovalsfordrugsandfordevicesthatwehavehavebeenforaxillaryhyperhidrosis.And,whyisthat?Well,thereasonreallyishistoricalandit’sbecauseofthewaythatdrugsaredevelopedandapprovedinthiscountry.Thereisaregulatorypathwayforhyperhidrosis,fortreatmentofaxillaryhyperhidrosisbecausethey’reinpreviousstudiesthathavebeendone,havemeasuredcertainthingsandhaveledtoimprovements.So,that’stheeasiestwayforanybodytogetadrugapprovedforhyperhidrosis,oranything,istofollowapaththat’salreadybeenused.Butwhatweheardtodayforalmosteverybodyisthatpalmarhyperhidrosisisreally,notforeverybodyinthisroombutformost,asimportantormoreimportantthanaxillary.Nottomention,plantar,craniofacial,inframammary,infragluteal.But,andalltheseotherplaces.So,thesearetheresearchgaps.Thesearethegapsthatweneedtoaddress.Weneedtoaddressthehandsandtheseotherareas.So,whathavebeenthehurdlesforthis?Well,wetalkedtodaysomeofyouwhoareunabletogetintoaclinicaltrialbecauseofgravimetrics.Gravimetrics,themeasurementofthesweatingthatyou’redoingonanyindividualday,anygivenday.And,youallknowthatyoudon’tsweatexactlythesameamount24/7.Youdon’t.Somedo,butformost,it’svariable.And,ifyouhavetohitacertaingravimetricminimum,meaningthatyouhavetosweatacertainamountatthatverymonment,whenyou’reinthedoctor’soffice,sittinginaroomfor30minutestoaccommodatetothetemperature,youmaynotbesweatingthatday.Andyoumaybedeniedentranceintoaclinicaltrialbecauseofthat.So,whatshouldberequiredtodemonstrateclinicalrelevanceofatreatment,notjuststatisticalsignificanceagainsttheplacebo?So,tosummarize,Ithinkthathyperhidrosisobviouslyyouguysknowisacommonproblem.Itruinsyourlife.Thebarriersfortreatmentincludealackofawarenessbymedicalprofessionals.OneofthethingstheInternationalHyperhidrosisSocietydoesisthatweeducateprofessionals.Howmanyofyouwereonthispanelandothersintheroomweretreatedbysomebodywhowaseducatedatahyperhidrosiseventoryouyourselveswerepartofthat?Lackofawareness.Trivializationoftheproblem.It’snotimportant,it’snotimportanttothedoctor,it’snotimportanttoyou,it’snotimportanttoindustry,it’snotimportanttothemedicalcaresystem,it’snotimportanttoinsurancepayers.That’sthebigdeal.And,alotofprovidersaren’tfamiliarwithtreatments.So,again,we’vesaidthisbefore.Thecurrentavailabletreatmentsarelimitedtoaxillaryhyperhidrosisonly.Why?Becausethat’stheeasyregulatorypathway.Botulinumtoxin,microwavethermolysis,expensive.WhyisBotoxsoexpensive?Well,Iusedtosayit’sexpensivebecauseitcamefromtheworldofacosmetic.Thecosmeticworld,andthissortofwasasideeffectofthecosmeticworld.And,I’veoftensaidifthisstuffweren’tBotox,ifitwasbananajuice,itwouldn’tbethatexpensive.And,nobodywouldcare.Itwouldbemuchmoreeasilyapprovable.Wedon’thavegooddataontheoff-labeluseofmanyofthegoodtreatmentsthatwe’vehad.Particularly,thesystemics,thesystemicdrugsthatweuseinchildrenandinadults.Weneedsomegooddataforthat,weneedsomegoodefficacyandsafetydata.And,weheardabouthowsomeofyouarewillingtoenduretheseside-effects,drymouth,musclespasms(Wendy).Ididn’tevenknowaboutthat,andshe’smyownpatient.They’rewillingtoendurethattogettheeffect,thetherapeuticeffect.And,sowegottadosomethingaboutthecostandasnewthingsbecomedeveloped,aretheygoingtobecostly,designerdrugsforpeoplewhocanpaycash?LikemiraDry,microwavethermolysis?Or,aretheygoingtobedrugsthataregoingtobemoreeasilyavailabletoothers?So,thewholepointoftodayistodevelopsomecollaborationandtoshareideasandtoshare

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goals,treatmenttargets.Let’sdeveloptargetsthataremeaningfultoyou.Youdon’tcarewhetheryousweat50mgofsweatinyouraxillaein5minutes.But,youcareiswhetheryoucanwearashirt.But,youcareishowitaffectsyourqualityoflife.Let’ssettleonsomemeaningfulandreproducibleendpoints,notnecessarilythisgravimetrics.Yes,it’sanobjectivething.Objectiveandsubjectiveforthatmoment.Forthat5minutes.But,it’snotreallyobjective,anditdoesn’treallymeasurewhatyourconditionisdoingoveraperiodoftime,longerthanthe5minutes.And,thisisreallyaqualityoflifeissue.Now,qualityoflifethingstendtobetrivialized.Particularlybyinsurancepayers.There’snoqualityoflife,whocares.But,thisiswhatthisconditionreallyis.Somebodysaidnobodydiesofhyperhidrosis.Well,that’strue,youdon’tdieofit.But,youmaydieifyoucommitsuicidebecauseyouhavecompensatorysweatingfromETSoryoumayhaveatremendouspsychologicalorotherproblemsatthemoment.So,let’sdevelopaqualityoflifemeasurethatisuniform,thatappliesnotonlytoaxillary,buttootherareasofthebody.And,let’sdevelopthisasthestandard.Theregulatorystandard,theclinicalstandardsothatwecanevaluateonetreatmentversusanother.And,thisisonapracticalbasis,everyonewantsacure.But,untilwegetthat,let’sfigureouthowwecandobetter.Andlet’sdoitbydevelopingaqualityoflifemeasurethatwecanuseforallformsofthiscondition.So,again,Iwanttothankyouallforcoming.IwanttoagainthankLisaforbeingtheheartandsoulofthisSociety.Itonlyseemslikea150years,butalongtime.And,lookforwardtogreaterandbiggereventsinthefuture,allkeepintouchwiththeSociety,lookatthewebsite,readthenewsletters,asI’msureyoualldo.So,again,thankyouallforcoming.Anyclosingremarks,Lisa?

LisaPieretti:Thankseveryone,thishasjustbeenamazing.Ijustwanttoremindyouthatyoucansenduscommentsintheopencommentperiod.JustemailChristine@SweatHelp.org.EveryonehereknowsChristine.Thepubliccommentisopenfortwomonthsstartingrightnow.And,allofthecommentsandthewebcast,theyareallgoingtobepartofourofficialreportthatwemakewidelyavailabletotheFDA,toourinnovatorsthatareinthisroom.Wewantyoutoshareyourexperience,expandonsomethingyouheard,orsomethingyouthinkmaybewemissed.Butwhenyousendinyourpubliccomment,there’snolimit.There’snolimittothelength.So,wehadtorushthroughtoday.But,youcanwriteanovelandputitaspartofthecomments.Everyoneiswelcometobepartofit.Thatincludesadvocates,industry,everyone.Yourmom,andthey’llbeincorporatedintooursummaryreport,whichwillbeavailabletoallandwidelydistributedinthirdquarternextyear.Thankyou!And,thismeetingisadjourned!

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PublicComments

Hello,Iamasuffererofhyperhidrosis.Ivehadmyentirelife.Theearliestmemoryformewas5yearsoldfillingmylittlepursewithtissuesasawaytohideandwipemysweat.AsIgotolder,Ibecamedependentonsweaters.Icouldnotleaveorbewithoutasweater;usingthesleevestocovermyhands.InmiddleschoolIwouldevengotoschoolinmittensandteacherswerealwayssuspectofwhyIconstantlyhadmittenson.Iliveinsoutherncaliforniaforrarelydoweconfrontanyweatherthatrequireswarmclothingletalonemittens.Mycommentwouldbetoeducatenotonlyprimarydoctorsbutteachers.Hyperhidrosishasaffectedmyabilitytosucceedintheclassroom.Specifically,ithasimmenselyimpactedmytesttakingabilities.Onanothernote,everytimemyinsurancechangesIhavetofightandappealcoverageforpropantheline.CurrentlyIhavebeenpaying$40foronemonthanda90pillsupply(pertrialanderror3pilladayworksbest).Althoughitis"covered"itisindicatedasatier3medication.TheyrecommendItakeotheralternativesbutIcannotandIhavebeenwaiting2monthsforaresponsefromappealsdepartment.Whatthemedicalfieldandinsurancecompaniesdon'trealizeisthisisanecessity.Ineedtotakeiteverydaytohaveachanceatcontrollingthesweat.TopicaltreatmentsareinsufficientandthisistheONLYhopeIhaveatmaintainingthesweat.Actionneedstobetakennow!-CommenterHi.Iliveinkenya.Amhappytoknowthatfinallythereisasolutiontomyhyperhidrosisstate.Iknowthereareothersouttherelikeme.Wearethe5%oftheworldspopulationwhohavethisproblem.IcallitaproblembecauseIknowhowdeeplyonegetsaffectedwithit.TherearesomeoutthereIknowcan'taffordthetreatmentbutamassuringthemnottogiveuphope.Ithankthisorganizationforopeninguptousthepatientsandalsoworkingonthetreatments.Ipersonallycan'taffordittotravelallthewaytotheunitedstateswillbeetoocostlyforme.Butstillthatdoesn'tbringmedownbecauseIstillhavetofightitbynotgivingup.Ihavebeenembarrased,humiliatedbutamnotshaken.Istillhavehope.FinallyIstillthanktheinternationalhyerhidrosissocietyforbeenthereforuswhennoonewasthere.-CommenterOnbehalfofallofourFDAcolleagues,wewanttothankallofthosesufferingwithhyperhidrosisandfamilymemberswhosoeloquentlyandcourageouslysharedtheirexperiencesatthemeetingthismorning!Weunderstandhowmuchcommitmentandeffortittookforthemtoprepare,travel,andparticipateinthemeeting,andwetrulyappreciateit.Thestrengthanddeterminationthesefamilieshavecontinuouslydemonstratedisinspiring,andweareincrediblygratefulfortheopportunitytheyprovidedusinsharingtheirstories.-MeghanaChalasaniIhavesufferedfromHyperhidrosisforaslongasIcanremember,soprobablyaboutage5.Itwasn'tuntilIstartedgoingtocollegeandtookamedicalterminologyclasstorealizethatthisisarealcondition.Ineverdidresearchaboutmysweatyhands,feetandunderarmsbecauseIwastooembarrassedandIthoughtthatmaybeIjustgotmorenervousthanotherpeople.CometofindoutthereisaHyperhidrosisSocietyandtherearesomanypeoplewhosufferonadailybasiswiththesamecondition!IsuddenlyfeltrelievedthatIwasn'talone.IthoughtthismaybeaquickandeasyfixwithamedicationsoIcalledmyDermatologist.Wellit'snotassimpleasIthought.IstartedwithatopicalcalledDrysol.Theinstructionscallforyourpalmstobedrywhenapplyingthetopicalwhichisneverpossibleforme.AftertryingtheDrysolforabouttwomonthsit

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didn'thelpwithmyHyperhidrosis(thisismeantforpeoplewhodon'thaveitsoseverely).SoIthanstartedamedicationcalledRobinul.A2mgtablettotalingineightpillsaday.SojusttocontrolthisconditionIhadtotakeatleasteightpillsadaywhichisthemaximumdoseyoucanexceedwiththisdrug.Thisseemedtobehelpingatfirst,butthentheexcessivesweatingwouldcomerightbackonlyaboutanhouraftertakingthemedication.It'sbeenabout2yearssinceI'vebeenprescribedRobinulandnowIamtothepointwhereInoticesideeffectsfromthemedicationmoresothaninthebeginningsoit'stimeforanotherdoctorvisit.Ihavesevereheadaches,andverybaddrymouthtothepointwherethereisnosalivainmymouthandIcan'teat.EvenwhenIdrinkwatermymouthjustgoesrightbacktoasdryasitwas,ontopofstomachcramps.Ididhavethesesymptomsinthebeginningbut,ItriedtoignorethembecausetheonlythingthatseemedtocontrolthesweatingwastheRobinul.NowIamtothepointwheretheRobinulisnolongercontrollingmysweatingandthesideeffectsaretakingovermylife,soIhavecompletelystoppedthemedicationuntilIcanspeakwithmydoctorforfurtherassistance.AsofrightnowI'vebeenwhatIcall#FreeSweatingbecausethereisnothingIcandoatthemomenttocontrolthis.ThedermatologistIcurrentlyseerecommendedIgetintouchwithanotherdoctorwhospecializedinHyperhidrosis.IhavecalledjustabouteveryofficeinBerksCounty(Pennsylvania)totryandfindsomeonewhocouldhelpme.ThereareafewdoctorsthatdoatreatmentcalledIontophoresiswhichcanbeexpensiveandisn'tcoveredundermyinsurancebecauseit'sconsideredforcosmeticreasoning.Ithinkthataconditionthatimpactsmylifesonegativelyshouldbecoveredunderinsuranceandshouldn'tbemadethousandsofdollarsfortreatments.AnothermethodwasanETSsurgerybutmydoctorsaiditsnotrecommendedbecausethesweatingwillcompensatesomewhereelseandthatIamjustaveryunluckyindividual.SoIdisregardedthesurgerybecauseofthecons.Thisconditioncontrolsmylife.Itmayseemharmlesstosomepeoplebutthinkabouthowinconvenientitis.Howeasyisittoopenadoorknoborevensendatextmessagewhenyourhandsaredrenchedinsweat?It'sverydifficult,becausegrippingontosomethingdoesn'texistwhenyourhandsarethatsweaty.Notonlydomyhandsandfeetsweatbuttheyalsoswellwhentheseepisodesarehappening.ThemomentIwakeupthehyperhidrosisisactivated,mybedsheetscanbedrenchedinsweatfromjustmyfeet,Icannotopenthedoorwithoutputtingatowelorsomethingaroundtheknob.IcannotusetouchscreendevicesunlessIhaveastylus.Icannotopenapicklejar,oragallonoftea,anythingtheinvolvesgripping.Iconstantlyhavetoaskforhelpwithbasicdailyroutines.Iactuallyhavepicturesofmyhandsandwriststhatshowthesweatdrippingdownmyhands.MyconditionissevereandsometimesIdon'tunderstandhowthatmuchsweatcanleakoutofmyhands.Ialsohavetoworkaroundtheconditionsosomejobsarenotexactlyprimarychoicesforme.Anythingtheinvolveswritingcanbeadownfallforme.TheinkbleedsthroughthepaperorIsmudgemywriting,Thepapercrinklesfromthewetdropslandingonitandinanybusinesssettingthisisgoingtolookunprofessional.IjustwanttofindsomethingthatwillcurethisconditionorhelpitstaycalmenoughtothepointwhereIcandowhatIwantandlivemylife.Thebiggestdownfallformegrowingupandeventothisdayistheinabilitytowearsandalsorflipflops,evenbeingbarefootingeneral,Iwillslipandfall,theflipflopsbecomeslipflopsandIhaveactuallybrokenmyarmfallingdownthestairsbecauseIlostmybalancetryingtowalkinflipflops.Alsotheswellinginmyhandsinfeetmakeitincapableformetodocertainthingslikeheavyliftingsincemygripisnotthere,orstandingforlongperiodsoftimesometimeseffectstheswellinginmyfeet.OnethingthatIhavenoticedthathastremendouslyhelpedwithmyconditionissmallusesofmarijuana.Whenmyconditionflaresup,myhandsactuallystarttoswellandmynervesfeeltingly,andthensweatbeginstorundownmyhands,butwiththeuseofmarijuanaformedicinalpurposeshasactuallyimpactedmyconditioninapositiveway.Thesweatingactuallycalmsdownandtheepisodesseemtostop.IamnotsayingmarijuanahascureditbyanymeansbutithascontrolledittothepointwhereIcouldusethismedicinallyandItwouldhelpalotofthebarriersIfaceonaadailybasislikenotbeingabletousemyhandsforcertaindailyroutines.Ifeelcalmandnoticethesweatingsubsidesontopofthepain/swellingIreceivefromtheHyperhidrosisinmyhandsandfeet.Ibelievethatthereshouldbeastudyconducted

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involvingtheeffectsofmedicalmarijuanaonHyperhidrosispatients.Ibelievethatthefindingsofthiskindofstudywouldbeunexpectedandpositive.Ididn'tthinkthatusingmarijuanainamedicinalwaycouldactuallybenefitHyperhidrosisbutinmycaseithas.IwantmyvoicetobeheardandIwouldlovetohelpanyonesufferingfromthiscondition.Ifmedicinalmarijuanaissomethingthatcouldhelphundredsofthousandsofpeoplethanitshouldbeallowedandaccessibleforthesepatients.IfthereissomeothertypeoftopicalmedicationthatwouldhelpoveranotherIwouldwantsomeonetosharetheirstoryandsharetheirexperiencestohelpotherpatients.TherearesomanysidemanynegativesideeffectsofpillsandIagreewithfollowingthemostnaturalwayaspossible.That'salsowhyIeventuallywanttostoptakingRobinulalltogetherandfindanalternativethatisn'tsoharmfulforthebodybutsofarthisismyapproachandthisiswhathasworkedformeandmyjourneyoftryingtofindawayto#STOPTHESWEATING.P.S.IreallyappreciateanyonewhohastakentheirtimetoreadmyjourneyofHyperhidrosis,andreadaboutthemedicationItakethathelpsandanewapproachthatIbelievecouldhelpmanypeoplesuffering.Thankyousomuchforyourtime.-CommenterToday'swebeventwasveryenlightening.Thesenseofcommunitybecameevidentearlyon.Nooneunderstandssweatingaswellassomeonewhosweats.AlthoughIhadtosignoffearly,notlongafterthebreak,Icameawaywithasenseofsadness.Inaroomfullofpeople,andhundredsmoreparticipatingonline,therewasanoverwhelmingcurrentofpatientsbeing,atbest,letdownandatworst,ignoredbythemedicalcommunityandinsurancecompanies.Iunderstandthetearsthatwerepubliclyshedtoday.Iweepformyselfandforothersaffected.Personally,IfeelthatBotoxwouldbehugelybeneficialformycranial/facialhyperhidrosis.Obviously,insurancewillnotcoverthistreatment.Foradrugtobeapprovedtotreatoneareaofthebodyandnotanotherisbeyondmycomprehension.Whatcanwe,thepatient/sufferer,do?Irefusetobelievethisisarhetoricalquestion.Theremustbeananswer.WererepresentativesofAllergeninattendancetoday?I'mseriouslyaskingthisquestion.Whatcanwedo?ThankyouandtheIHHSforyourwork-CommenterFirstandforemostIhavetosaythatyouguysaretrulymyheroes!ThisweekendhadsuchahugeimpactonmylifeandIfeelsoempoweredbecauseofit AsIsatattheairportnexttosomegentlemanforaboutanhourlastnight,thesmalltalkbegan,thentheconversationwentonandhehadaskedwhereIwasgoingItoldhimPittsburghandheaskedwhyIwasinWashingtonDCandwhenItoldhimIwasataconferencefortheinternationalhyperhidrosissocietyIgotthatusualconfusedfacelookfromhim.Mynextquestionwas“youhavenoideawhatthatisdoyou?”hisreply“noIwasjustgettingreadytoaskyou“.asIwentontoexplainthedisorderandtoldhimaboutmyETSsurgeryandtalkedaboutthesocietyandwhatweweredoingthisweekendhewasstilllisteningintentlyandIsaid“areyousorrythatyouaskedyet..?”Hesaidactually“noI’mnot-I’mveryinterestedI’mactuallyageneralsurgeonandI’veneverheardofthisinmylife.”IjustwantyouguystoknowIwould’veneverhadthecouragetoadmitthatIevenhadthisdisorderbeforeyouguys-Iwould’veliedandmadesomethingupthatIwasthereforworkjustliketheonegirlinthepanelsaidbutitwassofreeingtotalkaboutit.TheconversationcontinuedandIsharedourFacebookpageaswellasthesweathelp.organdhewassointerestedI’vebeenstrugglingwithdepressionandactuallyhitrockbottomandcrashedandburnedafewmonthsagoandItrulyfeellikethiswasallinGodsperfecttiming.Thankyouforgivingmehope.-Commenter

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Iwantedtoreachoutandexpressmygratitudeforallofyourhardworkcommittedtocreatingandhostingsuchanamazing,engaging,andinspirationalevent.Youallfosteredsuchacaringandwelcomingenvironmentwhichputmeateaseandmademefeelcomfortablesharingmyexperienceswitheveryoneelse.Andtotheextendedfamilyandteam,Iamforevergratefulforallofyourhardworkandconvictionintacklinghyperhidrosisandraisingtheprofile/awarenessofthiscondition,youareallrockstars.IamsadIwasn'tabletopersonallysaygoodbyetoallofyou,butIhopeourpathscrosssoon,IhavenevermetsomanyHHchampionsinonesettingandwassogratefultomeetothersjustlikemeandheartheirstories.-Commenter

UnfortunatelyIwasunabletoattendthewebinarbuthavelivedwithhyperhidrosissinceIwasayounggirlandamgratefulfortheopportunitytosharemyexperience.Myfirstrecollectionwasbeingtakentothefamilyphysicianformyoverly-sweatyhands.MymotherandIhadnoideawhattheproblemwas-turnsoutneitherdidmyphysician.IwasdumbfoundedwhenIwenttothepharmacyforhisprescriptionandwashandedagallontuboflotionwith"FORDRYSKIN"onthelabel–somethingIlaughaboutnow.Throughouthighschool,thingslikeholdinghandsandpianopracticewereconfidence-busting–especiallyasateenagegirl.Asanadulttherearenewproblems–shakinghandswithnewcolleaguesorclients,holdingagolfclub,usingatouch-pad–thankgoodnesstheystillmakemice.Thenewsurgeoftouchscreensoneverythinghasbeenanightmare;Igetcrazystaresatmyold-fashionphonewithakeyboardanddreadthedaywhenthosewillbephasedout.Anissuethathassurfacedrecentlymaybesurprising.Beingaveterinarianandsurgeon,thebanofpowderedglovesbytheFDAwasquiteablow.Ofcoursethisisauniqueproblem–unsurehowmanyphysicians,dentists,surgeons,glove-wearershavehyperhidrosis–butthisisanissuethataffectsdailyworklifetremendously.LuckilyIwasabletofindadermatologistthatknewwhatIwasdealingwith.Asfortreatments,likemanysuffers,I'vetriedseveral.ForthepastfewyearsI'vegottenpainfulandexpensiveinjectionsofbotoxinmyhands–notcoveredbyinsurance&puttingmeoutofworkforafewdays–withthelack-lusterresultsnotlastingmorethanafewmonths.Thankyoufortheopportunitytosharemystory.Iamalwayshopefulmoreresearchwillbedoneonthiscondition,andthatemployersandinsurancecompaniesalikewillrecognizetheaffectithasondailylifeandworkproduction.-CommenterIdon’tthinkIcansaythisanybetterthanMeghanahasalready,butIwouldalsoliketocongratulateyouandyourteamonaverysuccessful,well-conductedandinformativemeeting!Ilearnedmuchabouthyperhidrosisyesterday,includingimportantinformationaboutepidemiology,diseasemanifestations,patientimpacts,lackofawarenesswithinthemedicalcommunity,lackofaccesstoqualitycareforsomepatients,thelimitationsofavailabletreatments,barriersinaccesstotreatment,andtheneedforadditionalpathwaysfordrugdevelopmentthatcouldresultinwideravailabilityoftreatmentsforpatients.Myheadisspinning!Iwouldalsoliketoextendaspecialnoteofthankstoallofthepatients,familiesandcareproviderswhotraveledtoDCtoparticipateinthismeeting.Iambothinspiredandhumbledbytheirstrength,determinationandresilienceinthefaceofthemanychallengesoflivingwithhyperhidrosis.KendallMarcus,MDThanksgivingDayistomorrow,andIamstillintheprocessofabsorbinghowthankfulIamtohavebeenapartofanrevolutionaryeventsuchasthePFDDConferenceinD.C.Itisstillsosurrealtome.Ihave

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beendreamingaboutthepossibilitythatHyperhidrosiswouldevenbeatopicofdiscussionforwhatseemslikemywholelife(literally).IamtrulythankfultohavefoundtheInternationalHyperhidrosisSociety.Iwanttofirstthankeachandeverypersonwhomadethisdreambecomearealityforsomanyofus,andtoLisa,fordrivingthisshipthatsomanyofuswereluckyenoughtocomeaboard.IalsowanttogiveaBIGthankyoutoChristineforstayinginsuchgreatcommunicationwithmethroughoutthiswholeprocessandhelpingtogetmyfamilyandIoutthereforthisevent.Lastweek'sconferencewastrulyanempoweringexperience.IamsothankfulthatIwasgiventheopportunitytohelpcreateawarenessandhopefullymakeadifferenceinthelivesofsomanydeservingothers.Ifeelsoblessedtohavefoundacommunityofpeoplelikemewhoexperiencesimilardailystruggles.Iamevenluckiertohavethemanyofyou,whoarecompassionatetowardsadvocatingandunderstandingthestrugglesHyperhidrosissufferersexperience.Youreffortstomakeadifferenceinsomanylivesallaroundtheglobeareimpressiveandworthwhile.CreatingapositivechangeinasmanylivesasIcanisapassionofmineaswell.IhopetobecomemoreinvolvedintheInternationalHyperhidrosisSociety.IbelieveIhavewhatittakestoimpactothers'livesaroundmeinapositivemanner,andIcanonlyhopetodosoeachandeverydayofmylife.Lisa,IknowthatIcanspeakformanywhenIsaythatyouaretrulyaninspiration.ThankyousomuchandIloomforwardtobeingapartofmoreopportunitieslikethisandtogetmoreinvolvedwiththeInternationalHyperhidrosisSociety.-CommenterThislastweekhasbeendifficultwiththeimmenseheatIfeelduetothetimeinmymonthlycycle.TheinternalvolcanoeasedofflastnightsohereIam.UnfortunatelyImissedthebeginningofthewebcast,butdidwatchthelastpaneldiscussion,whichIfoundheart-breakingandwarmingatthesametimejusttoknowthereassomanyotherswiththisdebilitatingcondition.Iawaittheuploadtowatchitinfull.Ididmakeacommentonthedocket,whichwasIthinkthereneedstobemoreresearchintotheembryonicstageandhypothalamusdevelopment.Ithinkthisiswherethemalfunctionbegins.WithregardtoETSorELStheredefinitelyneedstobemorestrictregulationsinplaceastowhoperformstheseextremelyintricatesurgeries.Nosurgeonshouldbeallowedtoperformtheseoperationswithoutextensivepracticalexperience.Iwouldevensayafterhavingthem,andbeenoperatedonbyincompetentsurgeons,thattheyshouldbebannedaltogether.Anoverallholisticviewonthisconditionneedstobedeveloped.IhavesomewhatgivenuponthemedicalprofessionfortreatmentonthisasanythingIhavetrieddidnotsolveit,infactthesurgeriesmakeitamilliontimesworse,asinwithCSandextremelyimbalancedCS.Themedicationrobinulwhichwasdevelopedforsomethingentirelydifferentwillonlyslowtheprocess-whichatonetimeIwashappywithbutafterfattydepositsappearedinmyeyesInowwouldsaynototakingthismedicationatall.Myadvicetowomenespeciallyis-donotgothesurgeryroute.Lookintonaturalremedies,herbssuchassage,marijuanaandmedicinalChineseherbs.Tryhavingacupuncturearoundthehypothalamusarea-IhaveyettotryitasIonlythoughtaboutthispossibilityafterhearingthewebcastandotherswhohavehadthissincebirth.Iguesswehavetotryeverythingandanything.Ithinkitisafantasticthingwhatyouandyourcolleagueshavedone,itwasonlyafewyearsagoIwasstillashamedofthisconditionandhiditasbestIcouldfromeveryone.IfyouhavecontactwithanyotherIrishsuffererslikemyselfpleasegivethemmycontactdetailssowecanbeinsupportivecontact,Ithinkitisimportanttoreachoutandhelpeachothergetthroughthedarkdays.Thanksagainforbeingthereandpleaseletmeknowwhenthewebcastispostedonline.-CommenterThankyousomuchforthegreatopportunityyouallgavemetobeapartofagreatconference.Theexperiencetrulyhelpedmetobetteracceptandcopewithmycondition.Ihavesharedwithmore

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peopleaboutmyproblemandfeelsomuchmoreconfidentaboutmyself.Imetsomanyjustlikemyselfthathelpmetofeelsupportandlessinferior.AwonderfulthinghappenedtomeeventhoughwhenitwashappeningIdidn'tthinkitwassowonderfulbecauseIwasstillhiding.Whilebeingattheconference,AnewfriendpostedsomepicsonFacebookoftheconferenceandtaggedme.WhenIsawthatshehaddonethis,Iimmediatelythought,"whyisshedoingthisnowEVERYBODYwillknowmyproblem."Itwasn'ttoolonganotherfriendofminefrombackhomemessagedmeandsaid,"Ididn'tknowyouhavehyperhydrosis.Ihavehyperhydrosis.Ihateit.Pleasegetallinformationandshareitwithme".Iwasshocked.Ididn'tknowshehadthesameproblem.Nowwewillbeabletohelpandprovidesupportforoneanother.SoIhaveadifferentoutlookaboutthis.IfIcanhelpsomeonewhohasthesameproblem,thenIwillstophiding.Iknowthattherearealotofotherpeoplethatgothroughsomuchmoreinlifeandthisconditionisnotlifethreateningbutitcanbelifealteringandithasbeenlifealteringforme.Beingaroundotherpeopleattheconferencewhosharedtheirstories,wasanincredibleexperienceforme.Icouldrelatetosomanythingsthateachonehastodealwith.Ifeltsomuchloveandsupport.IfeltlikeIdidn'thavetohidemyconditionatall.ThepeoplethathadanIDbadgethatwereconsidered"experts"IfeltsocomfortablewiththembecauseIknewtheyweresufferersasmyself.ItwasfunnybecauseIfeltmyselfmigratingtothe"experts"insteadofthe"advocates".Nottosayanythingbadaboutthe"advocates"becauseIthankGodformy"advocate"myhusband.Hetrulysupportsmeanddoesn'tmakemefeelbadaboutmyselfinanyway!!Meetingotheradvocateswasgood,butIfeltmyselfgoingtothe"experts"becauseIknewtheyknew. Myappreciationtoallwhohelpedwiththeconferencetobeagreatsuccess.THANKYOU!!ToLisayouaretrulythebestforthisorganization!!Thankyouforadvocatingforus!Youareanamazingwomanwithabigheart.BigbigKudostoyouLisaforgettingsuchanelaborateconferencetogether.Thankyouforthestonepaperweight,thetowelandallthewonderfulaccommodationsforaperfectstayinWashingtonD.C.YouaretrulyamazingLisa!!MayGodblessyouandyourstaffabundantly!!-CommenterWhenmydaughterwasaround12yearsoldshesharedwithmeshehadtroublewithherhandssweating.TomygreatregretItoldhereveryonesweats,it'sokay.Ihadneverheardofhyperhidrosis.Ithoughtshewasjustbeingoverlyself-conciousofanormalbodilyfunction.Shehadtoshowmeduringoneofherepisodeswhathersweatyhandswerelike.IwasFLOORED.Ihadneverseenhandsthatsweaty.Herhandslookedlikeshehadjustputthemunderarunningfaucetandhadn'tdriedthemoffyet.Sheexplainedsomethingassimpleaswritingisattimesimpossible.Shecan'tgripthepen/pencilandthesweatsmearsthewritingonthepaper.Holdingobjectsattimesisincrediblydifficult.Drivingwasachallenge,wehadtogetoneofthosevelourwheelcoverssoherhandscouldconsistentlygripthewheel.Somanyeverydaytasksthatsomeonewithoutthisconditiontakesforgrantedcanposechallenginglogisticalproblemsforsomeonewithhyperhidrosis.Wetriedthedrisolwhichdidabsolutelynothingforher.WetriedRobinulbutdespiteherconditionshe'salwaysbeenwillingtoengageinvariousactivitieslikebasketballandanationalchampionshipmarchingbandprograminhighschoolsonotsweatingatallwasnotasolution.Shehasbeenunwillingtotryiontophoresisbecauseshe'sveryskepticalitwillhelpherandbotoxseemsanunnecessarilypainfulone.TheETSprocedureisscarythoughdevelopmentswiththeclampsseemsmoreviable.She's19nowandforthelast4-5yearsshe'sbeenrestrictingherliquidintaketotrytocontrol(minimize)thesweatinginherhands.Shealsohasplantarhyperhidrosisbutisn'tasaffectedbythatasthepalmerhyperhidrosis.Thisisnotagoodcourseforher,she'sexperiencingrecurringmusclecramps,dizziness,etc...butsheseesthatasacceptableifitwillkeephersweatingtoamorebearablescopewhereshecanworkanddohercollegehomework.Iamonceagainresearchingtoseewhatadvanceshavebeenmadeinthelast5yearstosee

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ifthereissomehelpforherthatdoesn'tinvolveriskyETSprocedures.Thereareafewencouragingthingshoweverwiththeadvancementsinsomanythingsinthiscountry,Iexpectedmore.TheworkthatIHHSandotherorganizationsperformisverymuchneeded.Thisconditionimpactsapersononsomanylevels,physically,emotionally,andemotionally.-CommenterMyhyperhidrosisconditionbeganduringpuberty.I'monly19yearsoldandIliveinTexas.IhavetowearajackettoworkbecauseI'membarrassed.Idon'twantthisconditiontohindermyfuture.IhavemywholelifeaheadofmewhichiswhyIreallyneedaffordableoptions.Idon'thavemoneytospendthousandsofdollarsfortreatmentthatmaynotlastlongerthanafewmonths.Ialsodon'twanttotakemedicationwithalonglistofsideeffectsthatwillcauseotherhealthissues.Ishouldn'thaveto…-CommenterMyhyperhidrosisconditionbeganinmiddleschool.IwasteasedandlearnedtohideitasbestasIcouldbywearingdarkclothingorsweaters.Fortunately,lastsummermydaughterandIqualifiedforaresearchstudyusingatopicalgel.Wehadtocompleteaquestionnaireeachtimewevisitedthetreatmentcenter.Oneofthequestionswas,"Doesyourhyperhidrosisconditionkeepyoufromdoingregularactivitiesorkeepyoufromleavingthehouse?"Wesnickeredwhenwereadthiswonderingwhyitwasevenonthepaper.FastforwardtoattendingtheoutstandingPFDDConferenceinNovemberwherewemeetotherexpertsexperiencingissuesjustlikeus.Itwasanincredibleexperiencetohearandmeetpeoplestrugglingdailywiththiscondition.Evensomeoneasmyself,whohasthisproblem,didn'trealizetheextentandhowdebilitatinghyperhidrosiscanbeindailylife.Obviously,awarenessisthekey.Afterattendingthemeeting,Imentionedtheconditiontoseveralpeopleandalmosteverysinglepersonknewsomeonethathaditbutdidn'tknowitwasactuallyamedicalcondition.Thankyouforhelpingthemillionsofpeoplecurrentlysufferinginsilenceandpleasedevelopsafeandeffectivetreatmentsforus.-Commenter"Reflectingonthisweekendandtheamazingpeople(whoarelikefamilynow)I�metwhosufferfromthiscondition#HypethidrosisIamsothankfulI�mettwowomenwhoinspiredmetosharemystrugglesandgetinvolvedafewyearsago.BeingpartofaneventwithFDA,researchers,doctors,andpatientstoraiseawarenessandsharetreatmentoptionsforthisconditionwasincredible.I�hopewecontinuetoshedmorelightandinspiremorepeopletosharetheirstories.#Hh#Knowsweat#yourenotalone#mommyihopeyoureproudofme"-CommenterIrepresentFilipinoHHgroup.TherearefewwebsitesdedicatedforHHsufferersandFBchatgroupsaswell.InPhilippinesalone,wealmosthave200membersinmyownFBgroup.NottomentionthatitsonlyoneoftheFilipinoHHgroupinFB;notcountedyettheotherHHgroupsandindividualsinFBworld..Sadtosay,themerestatusorcountofincreasingFilipinoswithHHcannotbeprovidedbyDOH.Iheardalotoftheirfearsanddespairandneedlesstoexplainfurther,themostdevastatingeffectofthisdisorderisthefeelingofbeinganoutcastinsociety.Mostofthemareliterallyafraidofsocialgatherings,likewhatyoudidatPFDDevent.Othersfortheworst,losefaithonthemselves..afraidtostudyandtowork..andalmostdecidedtostayindoorfortherestoftheirlives..ImyselfhasHH..butmycompassionformyfellowsbroughtmetoaddressblindlythisissuetoyourorganization.WeearnestlydesirethecollaborationofDOHandtheassistanceofmedicalandpharmaceuticalprofessionalstoprovideusaffordableremediesespeciallyforourHHfellowsintheprovincesandalsointroduceustothelatesttechnologiesintreatingHH.ThisIbelievewillgreatly

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decreasethe'fearfactor'ofthesesufferers;andwillallowthemselvesmoretotheimportanceandbenefitsofoursociety.-Commenteriama42yearoldmalefromSouthAfrica.IhadETS20yearsago.Thesurgeoncutbothnervesduetoexcessivepalmandunderarmsweating.ApparentlyaverysmallOPandindeeditwas,butbloodyhell,theconsequences!!compensatorysweating!!!!!Iamafarrierbytrade,andigothrough4to5setsofclothesperday,sometimesmore.Hatesummertime(alwaysloveditbeforetheETS),cantwearanylightcoloredclothes.iaveragearound5-10horsesaday.Athorseno2myclothesarealreadydrenched(pantsincluded)itisextremelyembarrassinganduncomfortable.Themoreisweat,themoreselfconsciousibecome,avicioussnowballeffectthatihavenocontrolover.itrytomotivatemyselfeverydayinthesummertime,andcarryahugetogbagfullofclothesandunderwearwithmeinmytruck.ialsofeelthattheCShasincreaseexponentialfromday1afterthesurgery.Iwanttomakemyselfmorevaluableformyclients,aswellastoincreasemyincome,butthismeansineedtospendmoretimelearningmoreskillsaroundtheforge,andthisinablazingAfricasun.......idon'tneedtosaymore.Justhopingthattherewillbeanaffordablesurgery/medicationoptioninthenearfuturethatwillgivemebackmylife,cureCSandhelpmesweatlikeanormalpersonwithoutanyharmfulsideeffects -CommenterIliveinNewDurham,NH.Ihavehadhyperhidrosisallofmylife.Primaryalloverbutmyproblemareaisthegroinandbuttocks.Ihaveusednumerousproducts,pads,powders,prescribedantiperspirant,glycowithnoavail.Thrusufferingdailyhumilation,depressionandnearlyabreakdown,peoplewouldthinkIwasdirtyorwetmyselforjustplaincrazy.IwenttoadermatologistinDoverNHhesaidonhiswebsitehewasexperiencedwiththeillness.Afternumerousattemptsofmedicationsitfailed.HereferredmetoBoston.IfoundtheInternationalHyperhidrosisSocietyonline.InNovemberof2014IwaspartoftheconventioninOrlando,Fla.ConvincedmyhusbandtoflywithmedowntoFloridatoreceivefreebotoxinjections.Itchangedmylife..Butwasonlytemporary.Iwasgratefulbutbacktosquareone.WhenIreturnedhomeIwenttoBoston,MassDermatologyfirsttheyreferredmetoawomaninMisssouriandthentheyreferredmetotherecosmeticofficewhodidnotdobotoxinthegroin.IdidfindadoctorinNYthatwanted$3000foronetreatmentinwhichIcouldnotafford.ThenIrememberedduringtheconventioninFloridaImetDr.PariserfromNorfolk,Va.Icontactedhisoffice.TheofficemanagercheckedmyinsuranceandreassuredmethatIhada$30Co-payandtheywouldgivemebotoxinjectionsinthegroinsoImademyfirstappointment.Manydoctorsdobotoxinjectionsbutforhands,feetandunderarmsnotthegroin.Againshaming....Againconvincingmyhusbandtoflydownwithmefortreatment.Theirstaffwereincredible.Absolutelytopnotch.IhadaPAnamedMallory.Icriedthruthewholeappointment.Ihadbeenshamedforyearstryingtobeaproductivepartofsociety.Wordsarentenoughtoexpressthehorrifichumilation.....Theystartedwiththeidodinetest.Lookedasthoughwewerebakingacakehaha.Iwassevere,theyhadsetaside1or2vialsbutIneededmore.MallorylefttheroomandcalledDr.Pariser(whowasinJapan)tohaveahandinhissecretstashofbotox(justkidding).HeinstructedhertogivemeasmuchasIneeded.4or5vials.Iwassooverwhelmed.Ican'tevenputintoanywordstheemotionaltollthishasputonme.ThruthepastfewyearsIwouldgofromNHtoVirginiaforbotox.Ifinallyleftmyjobthruhumilation.Lostmyinsuranceandambacktosquareone.Isowantedtobeapartofthemiradryresearch,amorepermanentsolution.Butagainonlyforunderarms.Andagainpeopleatmynewjobarestartingtonoticeandcomment.Ihavesocialanxietyanddepression.Thishasabsolutelydevastingeffects.Justaskyourselfcouldyouhiresomeonetoworkforyouwithwetpants!!!!!!Idon'tknowhowtokeepmychinupanymore.-Commenter

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Ihaveexperiencedvaryinglevelsofhyperhidrosissincemyearly20’s.Iama41yearoldmaleandbelievethefirsttimetheseepisodesstartedwereafterIwentthroughaboutofmononucleosis.Sincethattime,somethinginmynervoussystemwasactivatedandIhavedealtwiththeconditioneversince.Mysymptomsgothroughebbsandflows.Atmyworse,Icanbeinameetingroomandjustbreakoutintoafullheadsweat,literallydrippingfrommyforeheadandmakingtheotherpartiesthinksomethingisveryverywrongwithmeandmakingtheminturnuncomfortable.Duringmorequiettimes,Iwillhavefewerofthoseheadsweatsandjustsweatalotmoreinheatandexercisethananyotherpersonaroundme.Theseissueshavebeendebilitatinginmanyrespects.Ithascreatedsocialanxiety,theamountofsocialandworkfunctionsIcanattendasIneverknowwhenIwillbreakintoanunnaturalsweatetcetc.AttimesIhavetocontrolhowmuchIrunaroundwithmykidsbecauseIwillbedrenchedandneedtofullychangeclothes.Quitefranklythedepressingpartisinsteadoffocusingonenjoyinglifearoundme,Ispend80%ofthetimethinkingaboutifandwhenIwillhaveabreakoutandifIdo,howIwillmanageitwithoutcompletelyembarrassingmyselfandfamilywhichtakesabigchunkoutoflivingafulfilledlife.Ihavebeensearchingforsolutionsandsofarhaveheardverylittleresearchasitrelatestocranial/facialsweating.Seemslikepalmarandfootandevenaxillarycanbemanagedlocallyorthroughsurgerybutthesemorecomplexconditionshaveverylittleinthewayofsolutions.ItisuncleartomeifIhaveprimaryorsecondaryhyperhidrosis,however,IamhopefulthereisasystemicsolutionthatgenerallyreducessweatingsuchthatevenifIaminaworseperiodoftime,itblockstheoverreactionofthenervoussystemsothatIdon’thavetoworryaboutafullbreakoutinsocialsituations.Iwouldhappytohelpmorewithmystorybutwouldlikemynametobeanon.Thankyou.-CommenterThisiswhatIwantthefutureofhyperhidrosistreatmenttobe:Doctorneedtohavemorwknowledgeorsolution.treatmentneedtobecoverbyinsurance.Ispend3000on2botoxtreatmentwhichdidnthelpatall.wasteoftimeandmoney..-CommenterThisiswhatIwantthefutureofhyperhidrosistreatmenttobe:Somethingthatworkswithoutterriblesideeffectslikeurinaryproblems.HyperhidrosishasmademylifeverydifficultandI’veneverhadadoctorwhounderstands.Theyallthinkit’samentalissue.-CommenterHere'swhatIwantthefutureofhyperhidrosistreatmenttobe:Doctorsseethisasaweightissue.Itsnot.Theyneedtounderstandhyperhidrosis.Doctorsquestionlegitimacyofresearchnolonger.IhopesomedayIcantakeapillbeforeasocialoccasionorworkpresentationandNOTgothrough3-5hankeesandstillfindmyselfsweating.Therewillbespecificandpracticalcrownandfacialsweatingtreatments.IhopeIwillbeabletopresenttocolleagueswithoutthesympatheticquestionsof"areyoualright"duetosweatingwhilesittingandrelaxing.-Commenter

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ThisiswhatIwantthefutureofhyperhidrosistreatmenttobe:-Availableforreducedcostsand/orcoveredbyinsurance-Longerlastingandlessirritatingtoskin-Quickeracting-Availablelocallyandateverymajorhealthcarefacilityrightintheprimarycaredept.Thankyoufromapalmar,plantar,andaxillaryhyperhidrosissufferer.-CommenterMyconcernisthatthereisnoeffectivewaytotreatHyperhidrosisofthehead.-CommenterThisiswhatIwantthefutureofhyperhidrosistreatmenttobe:---MoreattentiontoacceptingandprovidingtreatmentfortheGroinarea.---Moretrainedphysiciansinthisarea.-CommenterMyhyperhidrosisstartedwhenIwas17andimpactedhugelyonmyconfidenceandstresslevelsthroughoutmy20’sand30’suntiltheintroductionofBotoxintotheUK.Iamnownearly50andmydaughteris18andalsosuffers,Iamdeterminedshewon’tgothroughtheshameandanxietythatIdidforover20years.-CommenterIhavehadhyperhidrosisinmyhandsandfeetsinceIwasabout5yearsold(mymotherrecognizeditfirst.)Idon'tevenknowwheretobegin.GrowingupwiththisconditionwasEXTREMELYHORRIBLE.IlimitedmyselfASACHILDandstillNOWasanadult,becauseofthis.Ithascompletelyruinedmylifeandcausedmesomanyproblems.IknowforafactIwouldliveadifferentlifeifIdidnothavethisproblem.Ihavebeendiagnosedwithanxiety(mainlysocialanxiety)anddepression.Mytreatmentsincludejustabouteverythingexceptsurgeryandbotoxbecauseitistoexpensiveforme.IhavetriedDrysol,Iontophorisis,Robinul(oralmedications)naturalremedies,etc.Younameit.AlsoIamEXTREMELYDISAPPOINTEDinhealthcareknowledgeregardingthiscondition.IhaveseenahandfulofDRswhoIfeelIinformedmoreaboutitthentheydidme.IliveinSouthTxButbacktothemainreasonforthiscomment/email.AfewquestionsIhaveare,Willtherebeanoralmedicationavailabletohelpoursweatingwithoutanuncomfortabledrymouth,nose,oreyes?Willtherebesomethingwewillbeabletotake/dowhilebeingpregnant?Willthecostoftreatmentbeaffordable?Andhowmuchlongerwillwehavetowait?I'm25yearsold,willbe26inJune.Iamscaredtopassthisdowntomyfuturechildrenespeciallyknowingthereisnotreatmentforitatthemoment.Idon'tknowwhatisharder,teenageyearsormyadultyears.Datingwasanightmare.Wearingsandalsandcuteshoesareano-go.Holdinghandsandlivinganormallifeisimpossible.Iappreciateallofyourefforts.Thankyouforlisteningtoourvoices.Icannotwaitforachange.-CommenterHere'swhatIwantthefutureofhyperhidrosistreatmenttobe:Sweatfreefromheadtotoe.Ihavehyperhidrosisandmyworstareaisthegroin.Treatmentsareavailablemainlyfortheunderarms,hyperhidrosisisnotonlythat,it'sthescalp,palms,back,groin,legs

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andfeet.TheperfectfutureforthetreatmentofhyperhidrosisisonewhereIcanwearapairofkhakipantswithouthavingtoworryifI'msweatingtoomuch.-CommenterThisiswhatIwantthefutureofhyperhidrosistreatmenttobe:iwantittobeatleastaffordablebythemajorityofus.Easilyaccessiblebecausethehyperhidrosiscommunityarespreadalloveracrosstheworld.Iwouldlovethemedicationnottohaveanysideeffectssuchasreddeningoftheskinetc.SomeofthissideeffectsresultstopaincauseIhaveexperienceditpersonallyasapatient.SomeofthemedicationsIhavetakenhaventcausedanychangebuthasonlyresultedtowastageofmyresources.Amkindlyrequestingforamoreefficientmedication.-CommenterHere'swhatIwantthefutureofhyperhidrosistreatmenttobe:Ihavehyperhidrosisofthescalpandface.Myfatherhadit.Mysonhasit.My11yroldgrandsonhasit.AndIthinkmy1.5yroldnephewhasit.Iam66,mysonis46.Myfatherisnotliving,hediedat63.IalwayssweatedmorethanmostgirlswhenIplayedsportslikesoftballorevenwhenIwenttothebeach.IgrewupinFLandasanadult,ImovedtoMNpartiallybecauseofthecoldweather.Itdidn'tmakeitgoaway,butitmadeitbadforlesstimesinceitwasaffectedbyhumidityandheat.WhenIhadmyfullhysterectomy,andseveralyrsleadinguptoitasmytestosteronebecamemoreprominentandmyestrogenless,thehyperhidrosisbecameworseandworse.(thiswasinmy40s)ThenIgotRheum.ArthritisandhavehadtotakemedicinesthataddtothesweatingandtherearetimeswhenpeoplethinkIhavejustcomeoutoftheshowerbecausemyhairisdrippingwithwaterrightofftheendsofthehairandthesweatisrunningdownmyhairlineandforeheadanddrippingoffmynose.Icannotwearmakeupatallforthepast10yrsduetotheeffectsofthesweating.Ican'tstylemyhairbecauseofitandIcan'teverwearwarmclothingevenwhenit'scoldoutside.IambacklivingwithmyfamilyinFLandofcoursethesummersherearelikehellforme.Irarelygooutduetotheembarrassmentofsweatingsomuchwhensomeonerightnexttomeisn'tevenbreakingasweat.LuckilyI'mretiredsothetimesIworriedaboutjobinterviewsorjobreviewswhereIwasnervousarenolongeraproblem.Butanytypeofstressfulsituationcouldtriggerasmallormajorepisodeofsweating.Atalargegatheringinarestaurantoffamilyandfriends,afterIhadeatenasmallamount,Istartedtosweat.Itriedtokeepdabbingmyfacewiththecottonnapkins,butmyhairbegantodripwaterontomyblouseandrundownmyface.Myneckwassoppingwetinthev-neckblousetothepointIhadtowipeitdryalsoalongwithmywholefacefinally.Finallyawomanwhowassittingacrossfrommeanddidnotknowme,askedifIwasfeelingalrightright.Iwantedtocrawlunderthetable.ThatwasoneoftheworstepisodesI'veexperiencedatmyage.Themeninmyfamilythatareaffectedbyitdon'thavethesameissueswithmakeuporhairstyles,butmysonwilltake2shirtswithhimifhewillbeoutforanevening.Andjustyesterday,mygrandson'sfacewasveryflushedafterplayingoutsideforlessthan15min.andIcommentedonhowhothelookedandflushed.Hesaidthekidsmakefunofhimwhenheplayssportsbecausehesweatssomuchandhishairissoakingwetaswellasaflushedface.My1.5yroldnephew'sbeautifulhaircanbedrippingwateronahotdaywhenotherchildrenorbabiesarenotshowinganysignsofbeingsohot.Itisdefinitelyhisscalpsweatingandmakinghishairwet.Pleasefindsomethingtotreatthisthatisn'tbotox.First,forallofus,it'stooexpensive.It'snotcoveredbymedicareorinsurance.Andsecond,it'snotforyoungsters.IhavepurchaseditemsthatIamsupposedtosprayaroundtheedgesofmyhairseveraltimesadaytostopthesweating,butitmakesmyhairlookgreasyandisjustasbadasifmyhairwaswet.Anditdoeslittleifanythingtohelpoverall.Idon'twantthistraittocontinueinourfamily.ItdoesseemtobelinkedtohightestosteroneasIwasdiagnosedinmy20sashavinganenlargedadrenalglandandhavebeentakingmedicinetosuppresswhatthetestosteronedoestoawoman'sbodyandpersonality.Inthecaseofmyfather,inhislater

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years,hewouldsitwithahandtowelaroundhisnecktowipehisfacewhenheate.Whenhewasyounger,heonlyworewhiteundershirtsandwhitepocketshirtssotheycouldbebleachedanddidn'tshowthesweatasmuch.Idon'tknowifanythingwillbefoundinmylifetime,butcertainlymyson's,hisson'sormynephew'slifeshouldn'tbeeffectedlikeminehasbeen.Theremustbesomethingthatcanbedoneforallagesofpeoplewiththisproblem.Youcan'thideitwhenyourheadandfacesweat!!-CommenterIhavebeensufferingHyperhidrosisfor50years,IhavetriedeverythingIcanthinkofwhat’soutthereinmarket,butsofarnothingworks.Pleasehelpmeandmyfamilyandeveryonewhohasthisdisease,TOFINDCURE.-CommenterThisiswhatIwantthefutureofhyperhidrosistreatmenttobe:Iwantpeopleandhealthprofessionalstounderstandjusthowdevastatingthisconditionis.It'snotjustsweatingabitmorethanaverage.It'sfullblownoverheatingthatmakesmewanttotearmyhairout,clawmyskinoffandliveunderarainfallofcoolwater.Idon'twanttobestuckonoxybutyninfortherestofmylifetocontrolit.OxybutyninistheONLYthingthathelpsmebuttheamountIhavetotakejustdriesupmybodyasawhole.IwantmoreresearchandIamawillingsubject.Pleasehelpmeandallsuffererswiththisawfulcondition!-CommenterAsmuchasallHhpatientswouldlovetojustsolvetheissuealltogether,therearemanyofuswhoaretryingtoembraceit.I’vehadthesympatheticsurgery,myhandsarecompletelysweatfreebutthecompensatorysweatingisreal.Iseealotofadviceabouthowtodresstomakethesweatinglessnoticeable,differentantiperspirantstotryandsuchbutIhavefoundveryfewpiecesofadviceonhowtoactuallydealwiththeODORthesweatingcanleaveinclothing.Weallknow,onceclothinghasbodyodor,it’sthereforgood.It’sanissueI’msureeveryHhpatienthasdealtwith.Iwouldliketoseemoredevelopmentsintheareaofjustpreventingthebodyodororevenbeingabletoremoveitfromclothingwhileweallwaitforacure.-CommenterMycommentsconcerningarethefollowing:Ihavehadasympathectomyin2007.Thatsurgerycuredsweatinginmyhandsimmediatelyasthesurgeontoldmeitwould.IamcurrentlydoingBotoxinjectionsonmyfeetmaybeonceayeartoreducesweatinginmyfeet.Idonotfeellikethereisadequateknowledgeofhyperhidrosisamonghealthcareproviders.Iwasfortunatethatmysympathectomywascoveredbymyinsuranceandthatthebotoxinjectionswerecoveredbyinsuranceduetosweating.-CommenterHere'swhatIwantthefutureofhyperhidrosistreatmenttobe:Somethingthatislongtermandworks.Isufferatworkeveryday.Injectionsandmedicationdonotprovidemewithrelief.Iseeadermatologistandstillsuffer.Anyhelpwouldbeappreciated.Ifyouhaveanyinformationorhetoprovidetomeandmydermatologistthatwon'tcostmetoomuchIwouldreallyappreciateit.Ihavesufferedfromunderarmhyperhidrosisforover20yearssinceIwasateenandIneedhelp.-Commenter

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MydaughterandIbothhavehyperhidrosis.Mydaughter,now15,wasdiagnosedattheageof6.Mainlyhandsandfeet.Nowthatshe'salittleoldersomeunderherbreastandherunderarms.Wehavetriedeverything.Allthedifferentantiperspirants,OTCandprescription.Iontophresis,topicalRobinul.Ataround12yearsoldwestartedoralRobinul.Shetakes1mgtwiceaday.Shecantakeit3timesadayifabsolutelyneededforaspecialoccasion.Shedoesn'treallyhavealotofsideeffectsfromthemedicine.Shewillgetaheadacheifshetakesit3timesaday.Ithelpsbutdoesn'tstopitcompletely.Ihavesecondaryhyperhidrosis.I'mnotsurewhy.Ihaveathyroiddisorderbutmydoctorsaidthatisnotthecause.IonlytreatitinthesummerandifIwillbeoutsideandactiveformostoftheday,likeatanamusementpark,etc.IusetopicalRobinul,inaspraythatIbuyfromCanadaasmyinsurancewillnotcoverthat(IliveinUSA).Ialsotake,ifabsolutelynecessary,oralRobinultoo.2-3mgtwiceaday.Idogetsideeffectsfromtheoralmedication,drymouthanddryeyes.ThetopicalRobinulhelps.Imainlysweatexcessivelyundermybreastsandingroinarea.ItwassobadthatIwouldlooklikeIpeedmypantsandIwouldhavetochangemyclothespartwaythroughtheday.ThesprayRobinulhelps,Idon'tsweatasbadinthoseareasbutIstillsweatthere.Mydoctorjustdoesnotunderstand.Shesays"everyonesweats""Yourbodyhastosweat"Yes,butnottothepointwhereitlookslikeIpeedmypants!Mydaughterseesapediatricdermatologistthatunderstandsthediseasebetter.Iwouldliketoseemoretreatmentsthatareappropriateforteens,maybe12andup.Thatismiddleschoolageanditissodevastatinghavingasweatingproblemalongwithalltheotherchangesthathappeninmiddleschool.Iwouldliketoseetreatmentsthataretopical-botoxthatistopical,Robinulandotheranitcholinericsthataretopical,andcoveredbyinsurance.Myinsurancewon'tcoveritnowbecausetogetitintopicalformitisacompoundedprescriptionandtheydon'tcoverthat.Anythingthathaslesssideeffects.Andaffordable.IthinkMiradryisbeingstudiedtobeusedinotherareasthanunderarms.Thatwouldbegreat.-CommenterHere'swhatIwantthefutureofhyperhidrosistreatmenttobe:Iliveinatropicalcountry(srilanka)sothedaytimeisveryhotlike33degrees.whenigetoutorinmyhouseigetsweatingverybadlyinmypalmandfeetlikeawatersourcesoIcangonowhereandwhenigetnervoustheresultisthesame.butiusedtoapplyvaselineformyfootandpalmdailywhenigotosleeping,inmyfootthereissomekindofrelievefromitbutnot100%,sopleasedosomethingforthis.ithinkthiswouldbeahelpfulforthecommunity.-CommenterIrecentlywatchedthevideooftheevent.Itwasgreat.Ilearnedalotandwantedtogivemycommentaswell.Iechoalotofwhatwassaid,especiallyaboutfocusingonareasofthebodythatarenotjustthearmpits.Forexample,Ibelievepalmerwouldbeagoodareasinceitseemsfromthestatisticsthatsomanysufferfromthat.Also,Iheardalotofpeoplementionthatinsurancedoesn'tcoverthetreatments.Somyaskwouldbethatthereislegislationthatindicateshyperhidrosisasadiseaseandrequiresinsurancecompaniestopayfortreatments.-CommenterThisiswhatIwantthefutureofhyperhidrosistreatmenttobe:Alifefreetoholdhands,writemusic,beaffectionategetmynailsdoneandnothavingtowhereblackshirtsallthetime.I'vesufferedpalmer,underarm,andfeethyperhidrosisitstakenmylifeineverywayIfeardaytodaylifebecauseofbeinguncomfortableinmyownskin.Idon'thavethefundsorproperinsurancefortheexpensivetreatmentsbutI'mdefinitelyprayingforacure.-Commenter

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IhavebeendealingwithHHfornearly15yearsandhavenotgottenanyamountofrelieffromnumeroushealthcareprovidersanddoctors.Ialwaysjusthearthesamething-there'snothingIknowofforyoutotry.it'sjustthewayyouareIguess,althoughthere'snothingwrongwithyou.Thisisunacceptableandextremelyfrustrating.MyparticulartypeofHHiscomplete,wholebodysweating,sonormaltreatmentsofantiperspirantsorevenbotoxwouldnotworkforme.SowhatI'dwishforisformoreinvestigationandanysortoftreatmentforwholebodyHH.-CommenterThisiswhatIwantthefutureofhyperhidrosistreatmenttobe:Iwantmoredoctorstoprescribeanticholinergicsforiontophoresis.Ihavepalmarhyperhidrosisandiontophoresiswithanticholinergic(glycopyrrolate)andtheoccasionalroll-onantiperspirantworkswell.Ihavetroublefindingsomeonewhowillprescribeanticholinergictoaddtotheiontophoresiswater,soIhadtoorderfromadermatologyclinicinaustralia.Whycan'tIgetthisintheUS?SpecificallyinSanFrancisco?Manyclinicspreferbotox,butmyjobrequiresalotofdexterityandIcan'triskalossindexteritywithbotox.Surgeryisrisky,andIhearhadsomepermanentsideeffectslikeexcessivesweatinginotherareas.Also,Iwonderifwecanhaveananticholinergicroll-onantiperspirant?-CommenterIliveinNewZealandandhavezerosupportorunderstandingfrommydoctorspastorpresent.IworkinafrontlinegovtroleandfindithardtocopewithanxietycoupledwithHyperhidrosis.Iuse“scopoderm”offscriptatacostwhichhasasmalleffectbutunknownlongtermrisk?Thisis2017surelythereissomeeffectiveoverthecounterhelp?-CommenterHere'swhatIwantthefutureofhyperhidrosistreatmenttobe:Pleasefindhelpforcompensatorysweating thatoccursaftersurgerytostoppalmarhyoerhidrosis.-CommenterMy16yearolddaughtersuffersfromHyperhidrosisofhandsandfeet.WehavevisitedmanyphysiciansandIhavefoundsomethatareveryfamiliarwiththeconditionandtreatmentsandothersthatarenot.Thisconditionhasimpactedmydaughterslifeonanegativewayfromtheemotionalandphysicalpointofview,butatthesametimeithasgivenusstrengthandunitytoeducateherandmakehercomfortabletalkingtoothersthatdon’tknow.Sheisstillofageandwon’tsayitopenly,shehasdevelopedsafetymechanismstodealwithsweatyhands,butasshegetsolderasaparentIhaveotherconcerns,suchascareerwiseandevenmotherhoodforherinthefuture.ShewantstobeaDentist,aprofessionthatworkswiththeirhandsallthetimeandIcannotimaginehowshewilldoiteventhoughIknowshewilldoit.Ireadaboutothercompaniesbeensensitivetowardsemployeeswiththisconditionbutisnotwideenough.Howwouldshedealwiththisconditionwhenshebecomespregnant.Sheiscurrentlytakingmedicationandisnotworkingforherbutshewillnotstoptakingbecauseisevenworse.Throughoutherlifeshehadtodealwithteachersthinkingsheischeatingjustbecausesheistryingtodryherhandswithapapertofeelingrejected.IhopeIcanhaveenoughinformationtobeabletohelpher.-CommenterAndthanksforasking!Isuspecttreatmentforhyperhydrosiswillneedtobemulti-faceted,asthesyndromeinandofitselfismulti-faceted.Whilesomeexperienceitinjustonelocation,Iexperienceitfromeverysweatproducingporeinmybody!ThefirstremembranceofitIhaveisfromthe2ndgradewhenmyteachergotaftermeforhavingmessypapers,writingthathadbeensmearedbyawethand.

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AndI’mnow75,anRNretiredwithmanylessepisodesnowthatI’mnotworking.Amuchlessstressfullife!AndIsuspectweallhaveourstories.Ididn’tevenhaveanameforituntil,asanadult,IreadaboutitinanAnnLanderscolumn!Howincredibleitwouldbetohavesomething,anythingthatwouldhelp.Iappreciatewhatyourorganizationisdoing.-CommenterToolateformebutIpraytherewillbeandendforthisproblemIam65yearsoldnowandmysweatinghasruinedmylife.-CommenterHere'swhatIwantthefutureofhyperhidrosistreatmenttobe:Iwishmorehealthcareprovidersunderstoodexactlywhathyperhidrosisis.IliveinMSanditseemsmosthaveneverheardofit,muchlessknowhowtotreatit.IhavePalmerandplanter,andhavetrieddrysol,robinul,iontophoresisandBotox.Nonesuccessfully.Moreresearchisneededonhowtomakethismanageablewithoutinvasive,potentiallydamagingsurgery.-CommenterHello,whenwilltherebeasolutionforcompensatorysweatonabdomen,chestandback?It'samazingthatthereisnothing,nowadays,Iawaityouranswer,maybestemcellscanbethesolution?-CommenterIhavesufferedwithHyperhidrosisforalmost60years.Ithasnevergottenbetter,buti'mnolongerembarrassedaboutit.Havingboththepalmarandplantartypeofthisconditionhasbeen,intheearlydays,extremelyuncomfortable...neverwantingtodancewithanyoneatpartiesorevents,and,infact,ididn'twanttohavechildrenforthefearofnotbeingabletoholdhandswhenwalkingwithatoddler,forinstance.Regardingtheplantartype,itwasandstillisdifficulttowearmanytypesofshoes,althoughihavetriedtheSummerSoles...theydon'talwaysworkforme.Today,it’sreassuringtoknowtherearemanyotherpeoplewiththesameconditions...andtherearemanyproductsavailablefortheothertypesofHyperhidrosis.Iwould,therefore,beinterestedinseeingmoreproductsforPalmarandPlantarHyperhidrosissoon.Thebestthingicantellyouabouthavingthisconditionis:ihavethesoftestpalmsandsoles!-CommenterHere'swhatIwantthefutureofhyperhidrosistreatmenttobe:havingdoctorsREALIZEtheembarrassmentthatgoesalongwithHyperhydrosis!Mychildhassufferedforyears(she's11now)andherconcernsaredismissedasnotsignificant-itisarealproblemwhendoctorsarenotinformed.Iwouldalsolikemoretreatmentavailableandmoreresearch!Let'smakeHyperhydrosismanageableforallages!-CommenterI am on a lot of medications so the thought of taking another drug makes me cringe. It would be nice if there was gene therapy to get our bodies to react normally to stress and temperature. I have been living with this affliction for over 40 years. I am resigned to another 40 unless there is a break through. -CommenterThisiswhatIwantthefutureofhyperhidrosistreatmenttobe:

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-Nopainorirritationtotheskinunliketoday'streatments.-Idon'tmindhavingtodothetreatmenteveryfewtimesaweek.-Notmessingwithhormones.-MOREawarenessforHyperhidrosissothatwe'renotdisabledorbeinglookedasweirdinworkplace.-CommenterHere'swhatIwantthefutureofhyperhidrosistreatmenttobe:Effectivesoallhyperhidrosis'patientcanfeelfinallyrelief.Don'tforgetthatithastobeaffordableforeveryoneeverywhere.-CommenterThisiswhatIwantthefutureofhyperhidrosistreatmenttobe:Thetreatmentneedstobenon-invasive(i.e.,notsurgical).Thereneedstobeapowerfultopicalsolutionsothatpeoplecanlivetheirdailylivesbyjustaddinginasimpledailyactivity.Oralmedicationwouldbefabuloustosolvetheproblembutseemsunlikelyasasolution.-CommenterThisiswhatIwantthefutureofhyperhidrosistreatmenttobe:Childrenwithhyperhydrosisidentifiedasapartofchildhoodmedicalscreenings.Treatmentforsevereprimaryhyperhydrosisavailableasearlyasmedicallyfeasible.Severeprimaryhyperhydrosisneedstoberecognizedandtreatedinchildrenasitcolorsanddisruptsallchildhooddevelopmentalstagesinamannerdetrimentaltosuccessandachievementandsocialinteraction.-CommenterThisiswhatIwantthefutureofhyperhidrosistreatmenttobe:1.Moredoctorknowledge.Iconstantlygetbrushedoffbydoctorswhodon'tseemtocarethatitcanbedebilitatingtome.2.Moredrugtreatments.WhileDrysolworksforunderthearms,thatstuffisprettytoxicandyoucantuseiteverywhere.Oneofmyworstsweatingareasismygroin,andIwouldloveifIhadanoptiontotreatthatarea.3.Moreawarenessfromhealthcareprofessionals.-CommenterHere'swhatIwantthefutureofhyperhidrosistreatmenttobe:Healthcareproviderswhoactuallyknowhowtodiagnose&treathyperhidosis&medicationsthatactuallywork!-CommenterHyperhidrosishasnegativelyaffectedeveryaspectofmylife.Itstartsasachildwithkidsrunningawayandscreaming,"ewwshehasslimeyhands!"Soyoustopholdingyourfriendshandsuntiltheteachermakesyouforsomegameoronafieldtrip.Thenyoustartdoingmoreprintinginschoolbutnomatterhowhardyoutrytokeepyourworkneatyoursweatyhandssoakyourpaperandthepencilripsyour"wetspot".Beingateenagerishardenoughwithouttryingtohideyourabnormalities,constantlytryingtodryyourhandsonyourshirt,neverlettinganyonegettooclose.Relationshipsatthisstagedontexistbecauseyou'retoletaboytrytoholdyourhand.OfftoUniversityatleastnowIdon'tusuallyhavetowriteonpaper.Exceptduringmidtermsandfinals,bythispointIhaveworkedouttowearalongsleeveshotsso

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Icanpullitovermyhandtoprotectmypaper.Ohyaandstilltoselfconscioustoletaguygettooclose.Itdoesn'thelpthatwheneveryouhavetoshakesomeone'shandtheyimmediatelywipetheirsoffontheirpants.NowIamateacher.I'm30I'vebeeninoneshortrelationship.IgetanxietyattacksatparentteacherinterviewsknowingthatIwillhavetoshakeeveryoneshands.ItstilleffectsmylifeeverydayandIamunabletoimagineatimewhenitwon't.NowIwon'twalkyouthroughthestoryofmysweatyfeetorarmpitsbutIwilllistthethingsIhavetriedtotreatmyhyperhidrosis.Clinicalstrengthdeodorant-expensive,leavesarashandburningsensationBotox-veryexpensive,painfulprocess,Dr.wouldn'tdoitonmyhandsorfeetIontophoresismachine-veryexpensive,verytimeconsuming,painfulprocess,burntmyskinCarpecream-expensive,verytemporaryIhaveconsiderednerveclampingsurgerybuttherearetoomanyhorrorstoriesofpeopleSweatingjustasmuchjustinnewplaces,orloosingfeelingandmovementintheirhands.Ihopemystorycanhelpdoctorsdevelopenewtreatmentsoratleastgethealthplanstocoverthisdebilitatingconditionthatimpactseveryareaofpeople'slives.-CommenterIama58year-oldmaleandIhavesufferedfromGeneralizedHyperhidrosissincetheageof14,approximately.Atthatvulnerableage,localphysicianscouldonlytellmeto"sweatitout."Thiswasacrushingpredicamentandhascausedconsiderabledamagetomylife.YearslaterIwasprescribedPro-Banthine(propantheline)andlaterRobinul(glycopyrrolate),bothofwhichsuccessfullycontrolledmysweatingwhileatrest,buthadlittleornoeffectwhenIengagedinevenlightactivity(walkingseveralblocksorvacuumingaroom,forexample)orwhenIwasunderevenmildstress.Iwouldliketomakethefollowingsuggestions:1.FindatreatmentthatworkslikeanelevateddosageofRobinul,butwithouttheside-effectsthatsuchdosagesimposeupontheeyesandstomach.2.EducategeneralpractitionerstotheproblemofGeneralizedHyperhidrosis.Fewseemtobeacquaintedwiththeproblem,attemptinginsteadtodescribeortreatitlikelocalizedhyperhidrosis.Somearealtogetherdismissiveoftheproblem.Itwouldbeespeciallyhelpfulifschooldoctors&nurseswereinformedofthisproblemsothattheycanoffersupporttoaffectedyouthbeforetheiremotionalhealthisdamaged.-CommenterHere'swhatIwantthefutureofhyperhidrosistreatmenttobe:AwarenessBettereducationtophysiciansandinsurersBettertreatmentofferingsSocialconsultingduetosocialimplications.Correlationwithmentalside:anxiety,depression,panicattacks,etc-CommenterIdidnotattendthesymposiuminperson,butIdidwatchtheconferenceviatheinternetthatdayandwassopleasedtoseesomanyjoinedtogetherforthecause.AsIsitheresweatingfromthearmpits,palms,andfeet,IcanonlyhopethattherewillbefurtherdevelopmentsinthetreatmentforHh,becauseittrulyisanawfuldisordertoendure.Mostsuccessfulformeinthetreatmentshasbeenthebotoxinjections.Unfortunately,thecostisprohibitivetobeabletocontinuetodothis.It'sliterallythousandsofdollarsforthemedication.Ifdrugcompaniescouldlowerthecostofbotoxforthosesufferingfromamedicalcondition,itwouldbeextremelyhelpful.Savethepricegougingforthosethat

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areusingbotoxforastheticpurposes.Inanutshell,whatI'dliketoseefortreatmentpossibilities,issomethingthatisn'tcost-prohibitive,effective,andlonglasting.-CommenterHere'swhatIwantthefutureofhyperhidrosistreatmenttobe:Hi,IwouldliketoknowwhataretheclinicaladvancesforpalmarhyperhidrosiswhatpadescosinceIwas13yearsoldtodayIam29yearsold,andIalreadyspreadallexistingtreatmentscreamsbasedonaluminum,botox,ionotrophoresis,glycopyrrolateallwithtemporaryeffectiveness,includingoperateETSthatonlydecreasedmypalmarsweatin80%,fortunatelyIdidnothaveanysideeffectsaftertheoperation,althoughIdonotruleoutoperatingagain,Iwanttoknowpleasehowadvancedweare,wecannowcountonmiradryforhands?-CommenterThisiswhatIwantthefutureofhyperhidrosistreatmenttobe:1)Curethe"soaksyourclothes"version.2)Don'texcludeseniorsfromyourstudies.-CommenterIhavebeensufferingHyperhidrosisaslongasIcanremember.Justlikeeveryoneexplainedinthevideo,thisconditiontakesshugetollonpeopleslivesasitisa“disability.”Atmy38yearsofageIhavebeenembarrassedconstantlybypeoplebecauseofmysweat.Myproblemissweatingallovermybody.Itstartswithmyscalpandfacewhichmakesmeveryself-consciousandasaresultagetveryanxious,resultinginsweatallovermybody.TherearedayswhenIfeelhopeless,depressed,andoutofoptionsasthemoreIlookintoit,thereisnodefinitetreatmentoutthereforme.IhavetriedRibinolwhichdoesnotworkwellforme.RightnowIwasputonlamotriginebecausemostdoctorsthinkthisisapsychologicalcondition.Idon’twanttobetreatedlikeamentalhealthpatientwhenIamsufferingfromsomethingelse.Pleasefindamedicaltreatmentthatsomehowtargetsthewiringinternalsystem(thermostat)ofourbodiesthatmakesusfeeloverheatedfornoapparentreason.-CommenterThisiswhatIwantthefutureofhyperhidrosistreatmenttobe:Waystocoachpatientsthroughtheirmentalstrugglesthatcomeasabyproductofhyperhidrosis.Also,manyofthetreatmentsseemtoalleviatesymptomsratherthanremedythecause.Practicalwaystodealwiththesweating,evenwhenreducedwouldbegreattoknow.-CommenterIamsendinganemailinregardstothePFDDcomment.I’dlovetoseeamorepermanenttreatmentforhandsweating,perhapssomethinglikemiradry,althoughIamunsureifmiradryissafesinceitusesmicrowavetechnology.-CommenterHere'swhatIwantthefutureofhyperhidrosistreatmenttobe:AsaremedyIhavebeenusingicepackandsmallfrozenwaterbottleswhicharefrozeninfreezer,thesearewrappedintissue&putinmypantpocketorjacket,keepsitgoingforseveralhours.-CommenterThisiswhatIwantthefutureofhyperhidrosistreatmenttobe:

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Canbeprovidedbyfamilyphysicians,notjustspecialists.IsaffordableIseasytouseHaslittlesideeffectsProvidesimmediatereliefIdon'twanttohideanymore:(Handandfeetsweatinghaveruinedmylife:(-CommenterJusttoquicklysay:IwishIcouldbeatthemeeting,butIamfromasmalltowninSouthAfrica.ButIthankyoufortheefforttomakeourHhsufferers'livesbetter.SofarIcan'tdoanythingwithoutsweatblindingmeandmakingitdifficulttolook'decent'.Here'swhatIwantthefutureofhyperhidrosistreatmenttobe:ItshouldbesafetodrinkregularlyIwouldliketobeabletodrinkitandthendoexercisewithoutdrowninginmyownsweatItshouldworkforeverywhereonyourbody,notjustarmpitsorpalms.Isweatonmyhead-CommenterDearSweatHelp,Thankyouforsharingtheconferenceonyourwebsite.Thereisalotofgreatinformationpresentedthatisallinoneplace.IhopeyouwillkeepthisonyourwebsiteforanyonethatistryingtofindoutmoreaboutHyperhidrosis.Ifounditespeciallyinterestingthatoneoftheguestsintheaudiencethathadpalmarandplantarhyperhidrosishadbeenaphysician.ThatwasoneareathatIjusteliminatedrightfromthestartduetomyownhyperhidrosis.Ican'trememberatimewhenIdidn'thavethisdisease.Myfathersuffersfromitbutitdoesn'tbotherhimatall.Hejustwearsmoreopenshoessometimes.Hishandsarereallyneveraproblem.Justhisfeet.Hisgrandfathersufferedfrommoresignificantissues.Mybrotherdoesn'tseemtobeaffectedandheisadentist.Myoldestsonseemstobepresentingwiththeconditioninaminorway.Ihavetoldhimwhatthisisandencouragedhimtonotletitbotherhim,removehissocksetcandthatthisisnormal.Ithinkwhatmakesthingsworseisthinkingthatthisistheworstthingever.Itcanturnintoaviciouscycle.Iwassurprisedbythenewerinformation.IknewitwaslikelygeneticbutIdidnotknowthatthesweatglandsandperipheralnervoussystemwasnormal.Iamsurprisedthatthepersontalkingindicatedthebrainandthehypothalamus.Hasthespinalcordbeenruledoutalready?Ithinkthatfiguringthisoutshouldbethenumber1priority.Howcandrugsbedevelopediftheunderlyinggenetics,anatomyandphysiologyarenotunderstood?Itseemslikejustshootinginthedark.IwouldalsoliketotellthephysicianintheaudiencethatwasretiredfromRadiology,thatIpracticeyogaallthetime.Ialsodohotyogaandsweatbucketslikeeveryotherpersonintheroomwhichisamazingtonotbetheonlyonesweating.Everyoneusestowels.Theymakespecialtowelsspecificallythatlayrightontopoftheyogamat.Ifyouarenotsweatingtostartyoucansimplysprayitwithalittlewatersoyoudon'tslip.Ialsobringtwoadditionalhandtowelsandusethosetograbmyanklewhentheneedarises.Iamgladthattheyaredevelopingsometopicalapplications.Iwillhavetoaskmydermatologistabouttheseformysontotrypotentially.Idobotoxtreatmentonmyhandsevery4-6monthswhichhashelpedsignificantly.Italsoaffectsthestrengthinmyhandsthoughsothereisadefinitetradeoff.IwillbedoingYogaTeachertraininginthespringsoIamnotsureIwanttohavelimitedstrengthinmyhands.Thereareconstantdecisionsthathavetobemadeonadailybasis.WhenwedecidedtohavechildrenIreallystruggledbecauseIfeltlikeIwasbeingselfishforpotentiallypassingonthisdiseasetomychildrenortheirchildren.IstillfeellikeIwasselfishbutatleastIknowwhatthisisandthestrugglesoIcanhopefullyhelpmykidsgainalevelofcontrol.

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Thankyouforbringingthistolight.Ihopeyouwillbeabletodevelopsometreatmentsthataresuccessfulwithminimumpainandminimalsideeffects.-CommenterComplimentsandthanktoyouandtheentireteamforthegreatconcernabouthyperhidrosistreatments.Here'swhatIwantthefutureofhyperhidrosistreatmenttobe:HyperhidrosisTreatmentDecentralization(HTD).Whenthetreatmentisdecentralized,itwillgavefreedomandhappinesstoHhpatientallaroundtheworld.Wewhosufferfromhyperhidrosisaredyinginside,wewanttofellowship,tobepartofadevelopmentteam,tobeahealthworker.Wewantgetamongourfriends(ect),howcanwecarriedouttheseactivitieswithsweatyhands?WithtearsrollingdownmycheekIamappealingtothishumanfeelingorganizationtocometoouraidespeciallyinundevelopedcountries.Oureducationandtalentsarehidden.Andlotsofemployerfeels,wethatsufferfromhyperhidrosisarenervous,causetheydon'tbelievethere'sanythingcalledhyperhidrosis.ThanksforyourunderstandingBest regard -CommenterHello,isweatonfacemostly.Ineedcure.Thanks.-CommenterHelloThisiswhatIwantthefutureofhyperhidrosistreatmenttobe:1.Flaguptheconditioninhighschools.2.PlaceitontheradarofthehealthadministrationsbylobbyingCongressandworldwideequivalentssuchastheUKandScottishParliaments.3.HereintheUKit'salmostneverdiscussedsopeoplelikemeneedtodomoretoflaguptheworkoftheHyperhydrosisSocietyandpinpointitasaleadingcentreofexcellence.4.Acoolinggelspecificallyforthefacethatdriesclearwithoutblockingpores-thismaywellexistbutfromwhatlittleIknow,specialiseddeoderantsfortheunder-armsaresometimesusedbypatientsforthefacebuttheingredientsmightnotalwaysbesuitable.5.Unisexhand-held/automaticfansandwhicharesturdyandmedically-sanctioned.Noteveryonewouldwanttousethembutatthemomentcommercialfansrangefromwalldecorations(verylarge)tothinpaperfans(verysmallandineffective).Automaticfansaren'tmuchbetterandthebatteriesareweak.6.Perhapsabadgesothatifpatientschoosetodosotheycanwearitinsituationstheyknowwilltriggertheirconditioniehotmeetingroomsetc(Noteveryonewishestodrawattentiontotheirconditionbutitcouldbeanoptionforanyonewhodoes).7.I'mnotfamiliarwiththecurrentsurgicalprocedures-althoughIdoknowthere'saprocedurewhichstopsthesweatglandsfrombeingover-active.8.Greaterparticipationinclinicaltrials-thismaybesomethingthathappensintheStatesbutintheUKthere'slittletononewsonresearchorhowpatientsmightparticipateintrials.9.Ifit'suseful,YouTuberJackieAina(anichebeautyandlifestyleblogger)iscurrentlytheonlypersonwithaprofilewhohasadmittedshehasunder-armhyperhydrosis.Itmightbeanideatoreachouttoher-she'sbrightandveryconversational-butwhattheconditioncouldreallydowithisahighprofilecelebrityhappytosharetheirexperiencesofthecondition.Idon'tknowiftheabovecanbebracketedunder'treatments'butthey'reideaswhichmighthelpstimulateother,betterideas.-Commenter

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ThisiswhatIwantthefutureofhyperhidrosistreatmenttobe:Affordable,painlessandeasytodo/use.-CommenterHere'swhatIwantthefutureofhyperhidrosistreatmenttobe:Iwantyoutosupplycheaptreatmentmaterialstoeveryoneifpossibleorjustopenafreetreatmentcentre.Idon'thavemuchideaaboutHhasiliveinIndia.TobespecificihavepalmarHh.Ihopeyouunderstandmyproblem.Icannoteventypethisemailproperlyduetothis.iamsorryformyabsenceinyourprogramforIamastudentinaschool.Ihopeyouwillhelpmethroughthisandkeepmyfuturealive.-CommenterHere'swhatIwantthefutureofhyperhidrosistreatmenttobe:takenseriously!findoutwhatcausesitandtreatitwithoutsurgery.ihavehadheadsweatsfor10years,anditisgettingworse!-CommenterIwantedtoreachoutanonymouslytosharemythoughtsonthebelowWhattypesofnewtreatmentsdoweneed?IdesperatelyneedPlantarandPalmarHyperhidrosistreatments.Ifeellikethereisahighfocusonunderarmsweattreatments,butthehandsandfeethavelimited,difficultorineffectivetreatmentoptions.Whatrecommendationsshouldwemakeforclinicaltrialendpointsormeasurements?Whatcouldbeameasurabledatapointtodetermineifatreatmentisworking?TreatmentneedstohelpseverePlantarandPalmarHyperhidrosis,notmildormoderatecases.Treatmentshouldbelongtermorpermanent.Whatarethedownsidestocurrenttreatmentoptions?Theyeitherdon'twork(antiperspirant,iontophoresis)orareincrediblypainfulandnotpermanent(Botox).TheideaofMiraDryforfeetorhandswouldbeincredible.Thanksforyourhelp!-CommenterHere'swhatIwantthefutureofhyperhidrosistreatmenttobe:Ilongfortheretobeamedicationtotakethatwouldstopexcessivesweatingbutnothaveanysideeffects.Itwouldbesowonderfultobeabletotakeatabletonaregularbasiswhichwouldjuststopthesweatingsothatyouwouldnolongerhaveto'planahead'allthetime.Sothatyoudidn'thavetokeepdoing'pro-active'thingstodealwiththeproblem.By'pro-active'Imeanallthethingswehavetodotocope:usingpowerfulanti-perspirantsatnighttime-usuallywithacreamtocounteractthestingingandburning;sewingdressshieldsintoclothes;onlybeingabletobuycertaintypesofclothesandshoes,knowingaboutsocialengagementsaheadoftimesothatthepreviouslymentionedthingscanbedone.Couldhyperhidrosisresearchbeconcentratedonwhyandhowhyperhidrosisoccurs?Istheresomethingwrongwithaperson'ssympatheticnervoussystem?Isitsomethingtodowiththeirgenes?Ifeelthatthefutureofhyperhidrosistreatmentistodowithidentifyingtheactualcauseofthesweating.Whatisitthatmakesourbodiesactthisway?Atthemomentallthetreatmentsaretodowithstoppingthesweatingeitherlocally,orbytakingatabletthatdriesoutthewholebody.Ithinkresearchshouldtryandfindtheactualcauseofthesweating-thenI'msureatreatmentcouldbefound.Thankyouforyourwonderfulorganisation.IhavelearntsomuchthroughitandforthefirsttimeinmyliferealisethatIamnotalone.I'vealwaysfeltinferior,ashamedanddirtybecauseofmyhyperhidrosis(ithasruinedandgovernedmylife)soitwasamazingtoseeallthosewonderfulpeoplewhospokeatyourconference.IwishtherewasabranchofyourorganisationinEngland.Weneedone!

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-CommenterThefollowingisaresponseforinformationfromtheIHHSforpatient-focuseddrugdevelopment.Asasuffererofmultiplehyperhidrosis(Hh)areasfor35+years,thesearesomeoftheexperiencesandtreatmentsthatIhaveencounteredandmythoughtsandhopesforfutureresearchandtreatments.SymptomsandImpactsHHhasbeenamajorinfluenceinmylife.Ithasaffectedmycareerpath,socialinteractions,personalityanddaytodayroutine.Thoughtsandroutines,thatindividualsnotafflictedwiththisconditionwouldconsiderdebilitatingoratleastverystrange,havebecomenormalpartsofmydailyroutine.IchooseclothingbasedonhowmuchIthinkImightsweatthatday.IchoseacareerinNaturalResourcesbecauseIfigureditwouldbeoutdoorsmoreandthebreezemightkeepmyhandsdry,nottomentionthefactthatIwouldbeworkingwithcrittersinsteadofpeoplesoIwouldn’thavetoshakeasmanyhands.DuetoHh,myinteractionswithotherpeoplehavedefinitelybeenaffected.AlthoughIdidnotknowwhatitwasatthetime,itreareditsheadinmyearlyteens,probablytheabsoluteworsttimeinlifethatitcouldhappen.Sweatyclothes,smearedwriting,avoidingtouchingothers,recurringathlete’sfoot,nodating,embarrassment,etc.allaccompaniedmynewfoundaffliction.IthaschangedhowIengagewitheveryoneIcomeincontactwith.IfIhavetomeetnewpeopleoroldfriendseitherpersonallyorprofessionally,myveryfirstthoughtis,“Aremyhandssweaty?”Mysecondthoughtis“Ihopetheydon’twanttoshakehands!’andmythirdthoughtis,“HowcanIexcusemyselftogetoutofheresothatIdon’thavetohavecontactwiththem.”Whileothersmightthinkthisasneurotic,it’sjustthedefensemechanismthatmybrainhascomeupwithafterdealingwiththesituationfor35yearstryingtoavoidembarrassment.Thesamegoesforworkmeetings,socialgatheringsoranyothersituationswhereImayhavetotouchsomeoneorevensomethingthatothersmaytouch.Whenworkingorinteractingwithothers,ifIhavetoholdanobjectsuchasatoolorrecreationalequipment,IoftenconcentratemoreonhowtowipeitoffbeforehandingittosomeoneelsethanIdoonusingit.Avoidingsocialsituationsbyslinkingoffhasbecomemyeasiestsolution.IfIknowIhavetoattendameetingorsocialgathering,Ithinkabouthavingtoshakehandsdaysorweeksbeforeitoccurs,thatdoesn’tseemright.Insteadofenjoyinggettingtogetherwithothers,Idreadit.Hhhas“kept”mefrompursuingcareeradvancements,personalrelationshipsandmostsocialinteractions.Ihaveavoidedrelationships,marriageandstartingafamilybecauseIknewitwouldimpactothers.Ithascauseduncountedawkwardexperiencesandliterallyhasshapedmylife.Afterresearchingthisconditionthelast15years,IrealizeI’mnottheonlyonewhohashadthesesameexperiencesandthatthereareothersthathaveitfarworsethanme.HealthcareTreatmentTheinternethasbeenmygreatesteducationaltoolconsideringHh.ItletmeknowthatthiswasactuallyaconditionthataffectedothersandIwasnotjustananomaly.SincefiguringoutwhatHhwas,Ihavetakenstepstotryandlessentheimpactthatithasonmylife.Likeothers,IstartedbyaskingmydoctortogetaprescriptionforDrysol.Thathelpedverylittle.MoreresearchturnedupDrioniciontophoresissoIboughtonesincetheydidn’trequireaprescription.ThemachinesworkedbetterthantheDrysolbutthebatterieswereahassletouse.AtthatpointIfiguredouthowIcouldattacha9vbatterytomakethemlastlongerandnothavetoconstantlyorderfromthecompany.Ionlyusedthetreatmentonmyhandssincetheprocesswasverytimeconsuming(1-2hoursperweek)andprovidedonlysomerelief.Additionally,itcouldbefairlypainful.Next,IaskedadermatologistaboutBotoxinjectionsandtheyindicatedthattheyhaduseditforunderarmsbutnothandssoIgottobeatestcaseforhimaftermyinsuranceapprovedtheprocedure.Althoughitwasliterallyapaintodowithsomanyinjections,ItworkedquitewellformeanditwasamazinghowdifferentIfeltbeingaroundpeopleforthenextfew

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months.Itfeltalmostoddnottohavetoavoidmeetingotherpeople.Itwasalsonicenottohavetodotreatmentmultipletimesaweektogetthedesiredeffect.However,afterafewmonthsthesweatreturnedandbythattimemyinsurancechangedandwasnolongercoveringtheprocedure.Icouldn’tafford$4000ayeartokeepupwithitsomovedontothenextoption.MoreinternetresearchturnedupRAFischerandtheiriontophoresismachine.Unfortunately,itrequiredaprescriptionsoIwentbacktothedermatologistwhohadonlyheardofthisoptionbutneverhadwrittenaprescriptionforone.IhadobtainedtheneededinformationfromRA’swebsiteandgaveittothedoctorwhowaswillingtowriteaprescription.AfterobtainingRA’sdigitalmodelin2014,Ibeganusingitwithfairlygoodresults,atleastcomparedtonotreatment.WhileitisthebestoptionIhaveexperiencedtodatebasedoncostandconvenience,itisstillverytimeconsuming(1-2hoursperweek)andlogisticallydifficulttouse,nottomentionthe$1000up-frontcost.Itcanalsobepainfulifyouhaveanycutsonyourhandsanddon’tcoverthemcorrectly.Iuseitinconjunctionwithothertopicalantiperspirantsandthatseemstoimproveresults.Istillonlyuseitformyhandsduetothetimecommitment.Ifthemachinehad4outletsinsteadoftwoIwouldincludemyfeet.Myhandsweatingiscontainedtoalevelthatistolerabletomeonmostdays.Currently,Ihavelightsweatingofthehandsduringtheday.Asaresultofyearsofdealingwiththeconditionthough,mysweatglands(Iguessreallymyautonomicsystem)andnegativefeedbackloopstillreallykicksintohighgearinhighstressorsocialsituationsandthecontrolisn’tgoodenoughasIstillexperiencesweatandcoldhandsandfeetbutit’sbetterthanuntreated.GoalsandExpectationsfortheFutureThemoreIthinkaboutthisconditionandthefinancialgoldmineopportunityforpharmaceuticalcompaniesthatliesoutthere,itamazesmethatmorearen’tpursuingit.Ifyouhaveaconditionthataffectsmillionsofpeoplethatdesperatelywanttogetridofit,arewillingtospendsubstantialtime(maybeanentirelifetime)andmoneytoalleviateit,canchangelivesberemedyingit,whyhavenotmorecompaniespursuedit?Lookatthebillionsthat’sbeenmadeonbluepillsandthey’reonlyusedinfrequently.Thisissomethingthataffectfolkseveryday.Anyway,I’lltryandquantifywhatwouldbeameaningfulexpectationformeasitrelatestoHh.IfIwereabletoseea90%reductioninperspirationinmyhands,feetandarmpitson90%ofthedayswitha90%reductionintheamountoftimeitcurrentlytakestotreatmyconditionandwouldcomeatareasonablecost,IwouldconsiderthatmanagementofmyHh.Irealizethata“cure”isprobablysomethingthatIwon’tseeinmylifetime.However,herearesomeideasofwhatIfeelwouldbeacceptablegoalsforpotentialtreatmentsiftheywereveryeffective.Timecommitment-5-10minutesadaymaximum,one1/2hourperweekoronetreatmentevery6monthsorsoatonehourorless.Deliverymethod–atopicallotionorapplicationwouldbepreferredoralocalizedtreatmentareausingamachine.Iwouldliketoavoidasystemicdrugifpossible.PainLevel–mildplease,I’vedonebothbotoxandiontophoresisandwhileIcandealwithboth,somethingabitlesspainfulwouldbenice.Cost-$1000-$2000annuallymax,thisisalifealteringtreatmentifitworksandI’mwillingtopayforthatbutitwouldbeniceifatreatmentwereaffordabletoanindividualoratleastnotsobadthathealthinsurancecompaniesfighttoothandnailnottohavetopay.Accessibility–itwouldbepreferredifaprescriptionwerenotneededandIthinkthatmorepeoplewoulduseitiftheydidn’thavetogothroughtheembarrassmentofasking.Thankyoufortheopportunitytocomment.-CommenterThankyousoverymuchforthisforumandforgivingthosewhosufferwiththishorribledisease,aplatform.Iwatchedthelivemeetingwebcastoveraperiodofaday!Iwasreallyimpressedbythepanelandspeakersalike.....THANKYOU!-Commenter

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I'vesufferedfromHyperhidrosisasearlyasitreallybecamesociallyawkward.Mainlyplantarandpalmer.Iactuallydidn'tevenknowwhatitwasatthetime,justthoughtitwasmynerves.UntilIrealized,thiswasNOTthenorm.IrememberwritingtomyDraftermyvisitandbeingtooembarrassedtoaskwhatwaswrongwithme.Ican'treallyrecallwhathappenednext,butIbelieveshereferredmetoadermatologistwhereIwasgivenaprescriptionforDrysol.Thinkingthiswouldbethecureall,itwasnot,unfortunately.TreatmentsIhavetriedovertheyearsare:•Drysol•Robinol–slightreliefbutdriedeverythingout,feltlikemyeyeballsweregoingtopopoutandmytonguefeltlikeacactus;sodry•OxybutyninIcan'trecallthedryingaffectbutdon'tbelievethisworkedeither•Iiontophoresis–likeoneofyourpanelistsaid,thethoughtofmixingelectricitywithwater,butIdiditanywayoutofdesperationIdidnottryBotoxasmyinsuranceatthetimedidnotcoveritandthethoughtofhavingtogetanenormousamountofshotsinmyhandwasnotonmyfavoritelist,butIwaswillingtotryanything...ANYTHINGTOSTOPTHESWEATING!Aftermanyyearsoftryingtheabovemethods,Icouldn'ttakeitanylonger.DidsomeresearchandcameacrossasurgeryoptioncalledEndoscopicthoracicsympathectomy(ETS).Knowingfullonwhatthesideeffectswouldbeofcompensatorysweating,Ididitanyway.Iwasreallydesperate..mythoughtswere,atleastmyhandswouldn'tsweatandliterallydripdownmyarm...theheatoranywarmenvironmentweremyenemy.MyhandsandfeetwouldswellifIwasoutinthattempatureforanylengthoftime.Shoes,OMG,Iwouldhavetogetanythingwithclothsoles.Nothingwithmaterialthatwouldallowmysandalstogoflyinga100milesperhour.Testingoutmynew"me"hadadayatUniversalStudios,andthiswasthedayIknewrightawayIwasinthecategoryofthecompensatorysweating.Waitinginlineinthe90degreeweather,feelingthedripsofsweatstreamdownthefrontandbackofmybody...Iwasdrenched.Icouldnotwaittogetonthewaterridebecauseasofthatmoment,Iwasbecomingsoakingwetwithoutevenbeingontheride.Andnow,Ilivewithadrawerfulloftanktopstowearundermyregulartopstosoakofthegreatamountofsweatastheresultofthecompensatorysweating.IstillavoidanysocialeventswhereIknowIwillbecomeheated,Summertimeistheworst!Whenpeopletellmetheylovetheheat,IcringeJIcangoonandonhowthisdiseasehasseverelyaffectedmylife.Iamveryinterestedinjoiningthefightforacure,learningaboutnewtreatments,andkeepintheknowofanyresearchstudies!Today,myhyperhidrosisliveson.....HEisNOTmyfriendandIpraytogetridofhimforeveroneday!AllIwantisa"divorce"!!Wantanewbeginning,-CommenterHiInternationalHyperhidrosisSociety!IhavehadtodealwithhyperhidrosiseversinceIcouldremember.AtfiveyearsoldIlearnednottoholdanyone'shand,trytokeepyourpalmsoffyourpaperworkandwipeoffyoursweatfromanythingyoutouchedbeforegivingittosomeoneelse.Thiswasallconsideredeasyoncemyparentsstartedmakingmeparticipateinsomanyactivities.Ididmartialarts,butIleftsweatyfootprintsonthemat.Iplayedthepiano,butpoolsofsweatwouldcollectonthekeysandmyfingerswouldslip.Itookartclasses,butthepaperwouldcrumplefromthewetnessofmyhandsandthecolorswouldmix.SoccerwastheonlyactivityIenjoyed.Therewasnohandcontactinsoccer.Andwithsoccer,Icontinuedmylife.Iwasveryfortunatethatnokidbulliedmeformysweatyhands.Ofcoursetheoccasional,"Ew!"or"Gross!Yourhandsarewet!"wouldhurt,butItriednottoletitgettome.Theyjustdidn'tunderstand.Andhowcouldthey?Iwouldgivethemreasonsthatweren'ttruelike,"Ijustwashedmyhands,"or"Ijustputon

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lotion."IneveroncetoldanyonethatIhadhyperhidrosis.Ididn'tevenknowthepropernameforit.Mymotheralsohashyperhidrosisandshehasshownmehowtodealwithit.Luckily,fromher,IgetallthesupportIneedbutitstilltookmealongtimetofeelcomfortablewithmyownhandsandfeet.Justacoupleyearsago,Ifoundoutthepropernameforourcondition,hyperhidrosis.Andtoday,Ifoundthiswebsite.IgrewupknowingIwasn'talonewiththisconditionsincemymotherhasit,butit'snicereadingtheotherstoriesonhere.NowthatI'm17,Ibelievemyconditionhasgottenworse.Beforeitwasjustmyhandsandfeetbutnowmyarmpitssweataswell.Althoughthisisthecase,Iamcompletelycomfortablewithmycondition.IhavestartedtoinformmypeersofwhatIhaveandnow,wheneversomeonesays,"Ew!"Irespondwith,"It'sjustsweat."Andthat'swhatthisis.Sweat.Idon'twantsocietytoletanyonewiththisconditionbelievetheyaredisgusting.Youwillgetthroughthis,andwiththiswebsite,wecandoittogether.ThankyouInternationalHyperhidrosisSocietyforcreatingthiswebsite.Ihaveonlyheardofmymother'saccountonthiscondition,soitwassonicereadingeveryoneelse's.Ifeelevenmoreconfidentnow!-CommenterIamparticularlyinterestedinexcessivesweatingofthescalpandface.Iamfeelingveryhopeless.Ourelectricbillishigherthaneveryoneelse’sinourneighborhood.Theairconditionerruns24/7.Peoplecomplainabouthowcoldourhouseis.-CommenterLoveseeingthisgetattention.Ifirstnoticedaround3rdgrade,(40now).It'ssuchamisearablecondition.I'msureI'vemetpeoplethatsufferwithittoo,butyou'dneverknowbecausenoonetalksaboutit-CommenterThankyousoMUCHtoALLofyou!!!!IhavefeltsoALONEwithallofthisfor11years.NOONE--evenhubby,don'tseemtounderstand!!!!!!-CommenterSosohappyaboutthisevent.Ifeel"finally,I'mamongmypeople".WhenIfirstdiscoveredtheInternationalHyperhidrosissociety,abouttwoyearsago,Icried.JusttodayI'mhavingaverydifficultday(tothepointthatIamactuallyfeelingemotional).I'veshoweredthreetimesinthelast18hours.I'mgoingtoneedtoshoweragaininabout2hours,beforeIgotoadinnerand,dependingonthedinner,Imayneedtoshowerafifthtimebeforegoingtosleep.AndinbetweenshowersI'mnotevenfresh-withinminutesI'mbothstickyandsmellyunfortunately.RightnowI'velockedmyselfinameetingroominmyoffice,tobeawayfromeveryoneelseuntiltheendoftheday.Ohman,lovesomeofthesephotoswherepeoplearepurposefullyhidingtheirunderarmsandgreetingeachotherwithbumps,withabigsmile.Makesmefeelconnectedtothem.WhileI'mveryexcitedaboutthismeeting,doesanyoneelsewonderifanynewdrugswouldbeaddressingsymptoms,andnotcause?Thatwouldstillbegreat,butIamanxiousabouttakingdrugswhichhavesideeffectsandmaynotevenbeaddressingtherootcauseofwhateveriscausingmyHh.-CommenteriliveinasmalltowninsouthtexasandNONEoftheDRsihaveseen,knewhowtohelpme.everythingitriediresearchedonmyown.ihaveonealso.iontophoresisworkedformeforthefirstmonthandeversincethen,ivehadadifficulttimewithitworkingagain.handsandfeet.itsalittleirritating,andtimeconsuming.worthitforthemostpart.iknowforafactthatifididnthavehyperhidrosis,mylifewould

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beVERYdifferent.relationships.careers.school.friendship.etc.imissedoutonalotofthingsiwillnotgetback.iwasalsoturneddownforclinicalresearchbecausetheywantedHHpatientswithnoanxietyordepression.-CommenterItssogreattofinallybeabletospeaktopeopleandlistentoeveryonestories.Noonecanunderstandwhatwegothroughunlesstheytooarethiscondition.Yestothecareerpathforme....Ialsowantedtobeanurse,butwouldbesoembarrassedtohaveajobwhereIhavetohavephysicalcontactwithmyhands-CommenterTheseglovesfortypingwillcomeoffonedayandIwillbeabletofinallygooutsideandenjoylifeholdinghandswithyouall!Depresssion??Ofcoursewearegoingtohavedepression-wehavefeltaloneandfeltlikeweneedtohideadirtysecret.Wehideinourhomes.Wecancelplans.Welosepotentialrelationships.Webecomeaggressive.Wecry.Weareangry!!!!ETSsurgery???????C'mon?Thissurgeryshouldnotbeallowed!Thesweatingneedstocompensatesomewhere.Iwishtheywouldjustbanthissurgery.-CommenterDoestheFDAcurrentlyviewhyperhidrosisasacosmeticdisorder?HowwouldthefutureofHHcarechangeiftheFDArecognizeditasafunctionalprobleminstead?Anothernursehere,canactuallyposeahazardwhenyoucantgetonglovesinaquickmanner.Eitherriskpatientnotgettingcareoryoubeingexposedtopathogensifyoucantgetthemon-CommenterIhadaphysicianmakefunofme!!!Iamcuriousifanyofthewomeninherefeellessfeminine.-CommenterThewetpaperdamagedmyhighschooltests.Irememberateacheraskingme"Whyisyourpaperwet?"IthoughtIwastheonlyonewhohadsuicidalthoughtsasaresultofHH.Yes,mentalheatlh:depression,socialanxiety,anxiety,etc.Thisneedsmoreawareness.-CommenterSometimesifthereisanewpersonontheofficesometimesIhavetoleavetheareatoavoidthehandshake,orruntothebathroomtowashmyhandswithwarmwatertogetthemdrylongenoughtogetthroughthehandshake.-CommenterIsolationworkingathomeisbetterthanstressatworkandexcacerbationofHH.embarrassment,etc-CommenterHeadandfaceformetoo-havehadtostoptakingaromataseinhibitorforbreastcancer.-CommenterI'minsalesandfaceanheadsweatingeffectsmyabilitytomakealiving.AlwayswonderifmygrandchildrenwillremembermeasgettingthemwetwhenIhugthem.

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-CommenterThatisanotherfear,thatIwillpassthisalongtomy3kids.-CommenterImlatetothisconversationandtryingtoreadsomeofthistocatchupbutIsufferfromcompensatorysweatingduetoaSympathectomyprocedureabout20yearsagoanditsimpactedmylifeinaverynegativeway.I'vebeenona20yearsearchforasolution.Itsanissuethatneedsabiggerstage.Peoplethatsweatnormallyhavenoideathehugepsychologicalimpactthishas,onsomanypeoplesufferinginsilence.Itsaanissuenottakenseriously,orunknowntomany.-CommenterIevenconsideredshavingmyheadbecauseIwasalwaysdripping!Mygrandchildrensaidgrandmasmelting!-CommenterWheneveriholdbabies,includingmyown,ihavetoturnmyhandsaroundandholdthebabynotwithmypalmsbutthetopsofmyhands.-CommenterI'veruinedfamilyweddingpicturesbecauseofmyfacialsweating!!!-CommenterHandsandfeetforme.Ican'ttellyouhowthankfulIamforthiswebinar....beenfightingbacktearshereatworkbutdon'tcarebecauseit'ssoimportant!!-CommenterIthinkthereneedstobemoreneurologicalresearch,particularlyattheembryonicstageandhypothalamusdevelopment.-CommenterThisgavemealotofhope,andallowsmetofacethedayahead.-CommenterThisiswhatIwantthefutureofhyperhidrosistreatmenttobe:First,adefiniteanswertowhypeoplehavethisdisorder.Wherediditcomefromandhowisanxietyconnectedwithit.Moreresearchwillcreatemoresolutionsandtreatments.-CommenterTREATMENTSandRESEARCH(PatientperspectivesoncurrentapproachestotreatingHh,includingjourneytodiagnosisanddesiredoptionsfortherapy.)1.Treatmentscurrentlyusedortriedinthepast.standardantiperspirants,Driclor,odaban,hydrosolgel,homemadeiontophoresis,RAFischerMD-1aGalvaniciontophoresis,Robinul,andAvert,andamillionotherthingsthatwerepuresnakeoil2.Effectivenessoftreatmentsandbothersomeeffects.theclinicalantiperspirantslikeDriclorworkedfromaboutage16to22forunderarmsandhands.Istilldon'treallysweatfrommyarmsanymore.Itslikeitpermanentlykilledthesweatglandsthere.The

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effectivenessoftheDricloronmyhandsjuststoppedoneday.Evenwhenbecomingmorerigorouswithmytreatmentsitjustfailed100%.Iontophoresisonlykindaworkedandtook30mintoandhoureverydayjusttotreatmyhands.Nottomentionitwouldbeextremelypainful.Evenafterdoingiteverydayforweeksitstillonlymarginallyreducedmysweating.RobinulandAvertaretheonlytreatmentsthatstillwork.I'vebeenonthemforabout10years.OfcourseIgetdrymouth,anddryeyes,butIwouldn'ttradeitforanything.I'mmoreconcernedwithmoreseveresideseffects,tachycardia,digestiveatrophy,dementia,heatstroke,andpossiblyelevatedocularpressure.3.Detailsofcurrentregimensincludingofcomplexityandtimeconsumption.Forthefirst8yearsorso4mgofAvertfirstthinginthemorningonanemptystomachworkedgreatorevenmorethangreatalmostallday.LatelyI'veneededtoincreasemydosageto6mgadaytohavethesameeffect.Ivenoticedthateventheothersideeffectshavebeenaffectedsimilarly.4.Downsidestocurrenttreatmentsandunmettreatmentneeds.Noinsurancecoverage,oratleastthedrugisstillfairlyexpensive.Costsmealmost$200for67daysworthoftreatment.Potentiallossofeffectivenessovertime,nothingscaresmemorethanthepotentialthatIcouldlosetheabilitytotakethismedication.Isometimesgetfoodjammedinmyesophagus,anditisbeyondexcruciating,ithastobetheclosestfeelingtohavingaheartattackIcanimagine.NeverhadthisissueinmylifetillGlyco.Ibelieveitisinrelationtotheanticholinergiceffectsonsmoothmusclecontraction.5.Experienceswithparticipationinclinicalresearch.none,generallytherearen'tanynearme,andIdon'thavetimetotakeoffwork.AlsotheygenerallyfocusonproceduresI'vealreadytriedorfindtobepotentiallydangeroustomyhealth.6.Goalsandexpectationsfortreatmentrecognizingweallwanta"cure."Idon'tthinkacureispossible.Therewillalwaysbetreatment,unlessthefieldentersgeneticmodification.Honestlythough,IwouldcertainlyliketoseeagreaterfocusonPalmarhyperhidrosistreatment.Nearlyeverynewtreatmentisfocusedonaxillarysweating.WhichIhadforanumberofyears,sweatmarksfromelbowtowaisteveryday.Buthonestlyitisseriouslythemostmanageableformofhyperhidrosis.Palmarisfarmoredebilitating.Youcan'ttouchanythingwithoutsoakingit,drawing,takingtests,signingareceipt.Itmakesdrivingfarmoredangerous,notonlydoyourhandsslipoffthewheelbutbecausetheyaresowetyou'dratherhavetheminfrontofthea/cventsthantouchthewheel.Intimacyisterrifying,noonewantssoakingwetcoldhandsontheirbody.IworkedinarestaurantcookingfoodandIhonestlyfeltbadforpeopleImadefoodfor,wearingglovesisbasicallyajobhazardattimes,butsweatingonpeoplesfoodisliterallydisgusting.PuttingmoremoneyintoaxillaryHHiswastefulandvain.Weareonlytreatingthesymptomsoftheconditionnottheconditionitself.Itseemslikelythereasontherearesomanyaxillarytreatmentsispurelyforcosmeticreasons.Ithinkmoreresearchneedstobedonecorrectingthesystemicproblem.Ibelieveittobeanissueoftoomuchacetylcholineproducedinthebodyoranoveractivesympatheticnervoussystem.Isthereanyconclusivedataonthis?7.Keyconsiderationswhenchoosingatreatmentandmostmeaningfulendpoints.(What%ofsweatreductionwouldbemeaningfultoyou?)I'dliketohavewhatIhavenow,whenonAvert.IbasicallysweatwhenIamtoohot,usuallyfromexerciseorsittingindirectsunlightin70Fdaysorhotter.Ihavenoproblemsweatingwhenitmakessense.TheissuewithHHisyousweatcompletelyillogically.I'dhavetoaskmyselfwhenwalkinghomefromclassinthewinter,"whyamIsocoldIamshivering,andyetthesweatkeepspouringout?"Itsludicrous!I'dprefertohaveanxioussweatingstopcompletelytoo,butIrealizethatsprobablynotgonnahappen.

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8.Financialexperiencesincludingout-of-pocketexpenses,insurancecoverage/reimbursement,co-pays,andtravelfortreatment.Insuranceisbullshit,theydon'tcareaboutanyone.EverytreatmentI'vetriedhasbeenoutofpocket,period.AsifIhadachoice.SYMPTOMSandIMPACTS(Diseasesymptomsanddailyimpactsthatmattermost.)1.OverallimpactofHhonlife.Itsthebiggesthurdleinmylife,evenwhendoingtreatmenttomanagethecondition.Avertcreatessomanymoreproblemsthanitsolves,itjustsohappenstosolvethemostimportantprobleminmylife.2.Activities/choicesaffectedbyhyperhidrosis.Everything,literally,andIliterallymeanthat.ForyearsofmylifewhenIeitherhadnotreatmentormygototreatmentforthetime,lostitseffect,mylifewouldgotoaverydarkplace.I'vehadmassivedepression,cripplinganxiety,anddrugandalcoholproblems.Iveevenselfharmedandconsidered/attemptedsuicide.ItsnotthatI'msoupsetthatIsweat,itsjustthatithassuchInegativeimpactoneveryfacetofmylife.Itmakeseverythingmoredifficult,especiallythethingspeopleneedmostintheirlife,otherpeople.HonestlyIreallybelievethereisaphysiologicalconnectionbetweensweatingandanxiety.NowthatIdon'tsweatasoften,I'malmostneveranxiousaboutanything,atleastnottoanydebilitatingdegree.AndifIdogetanxiousitsforgoodreasons,money,jobs,relationships,logicalstuff.BeforetreatmentIusedtogetanxiousaboutgoingtoamovie,becauseifitwasexcitingorintenseIwouldbesittinginapuddlebytheendofit.3.Limitationsindailylife(focus,concentration,work,school,hobbies)andinrelationships.Mostlyconcentrationandfocus.Ifmyglycohasn'tkickedinyet,orforwhateverreasonjustisn'tworkingthatdayandIstartsweatingwhiletalkingtosomeoneinpersonitslikemyearsjustshutoff.Ittakeseverythinginmetolistentowhattheyaresaying,Igetcompletelyincapacitatedbymentallydealingwiththesweating.SometimesinthemorningsmygirlfriendandIgetintimate,whichisusuallybeforeI'vetakenmypillsorbeforethey'vekickedin.WellIcantellyoutheminuteIstartsweatingIcan'tstayaroused.Itinstantlykillseverything.IhavenoideawhyotherthansomesortofmentalblockI'vesubconsciouslycreatedovertheyears.4.Embarrassmentorsocialstigma/discriminationduetoHh.Honestly,Ithinkeveryonethathasthisconditioncouldtellyouitsucks.Butformeitsonlyasmallpartoftheproblem.Itsonethingifyoushakeapersonshandandthey'relike,"whyareyourhandssosweaty,gross!?"butitsanotherissuewhenyou'reentirelifestyleisbuiltaroundthisdiseasethatcausesyoutomoveandactandsayweirdshitjustavoiddealingwithanyofit.Formeitbecamewaymoreofjustfeelingcomfortable.Itgotreallyoldjustbeingweteverywhereallthetime.Alsoyou'realwaysfreezingcoldorreallyhotnomatterwhat,Ineverknewthefeelingofcomfort.Mostcommonlysomethinglikemyhandsandfeetwouldbeicecoldandtherestofmewouldbeabsolutelyonfire,drippingfromeveryinchofskinonmybodynomatterthetemperature.5.Pediatricperspectiveincludingimpactsondailylife/school,socialramifications,emotions,anddevelopment.Fortunately,IneverknewtherewassomethingwrongwithmetillIhitpuberty.Imeanmybrotherandmycousinwouldneverusethevideogamecontrollerafterme,andwouldmakefunofme,butIthoughtitwasjustthat.ItneveroccurredtomethatmylifewouldbedictatedbythisdiseasetillthedayIdie.I'veprettymuchsummedupmostoftheramificationsintheotherpartsofthissurvey.6.Healthcarejourney:interactionswithproviders,accesstocare,&diagnosis.Mostofthemknewlittletonothingaboutthecondition.Ihadonedoctorthathadasisterinlawwiththesameproblem,soheaskedmewhatIthoughtsheshoulddotohelpherwithit,hahahaha.MosteverydoctorI'vehadtoteachaboutthecondition,thevarioustreatments,andalltheproblemsassociatedwithboth.AnyoneelseI'vehadthoughtIwasnutsoroverreacting.EverystepI'vetakenin

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thejourneyindealingwithconditionI'vehadtofigureoutmyself,bydoingcountlesshoursofresearch.I'vereadmedicaljournals,checkedoutlibrarybooks,readthousandsofanecdotesfromothersufferers,andeventriedexperimentaltreatmentsonmyself.TheonlythingIhaven'tdoneisgobacktoschoolandgetmymedicaldegree.WhatsucksisevenmyparentsthinkIamobsessed,theydon'tseehowimportanttreatingthisconditionis.Icanunequivocallysaythatwhenonafunctioningtreatmentmylifeispleasuretolive.Evenduringsomeoftheotherhardpartsoflifenotconcerningthisdiseasethereisstillthisbrightlittlelightinmymindthatremindsmethattomorrowwillbeabetterdayandthatthingswillgetbetter.WithouttreatmentIneverhadthat.-CommenterIwanttothankyouallagainforputtinginthetimeandresourcestohelppeoplesuchasmyself.Ifeelthatweareontheroadtowardsdiscoveringmoreeffectivetreatmentsforthiscondition.Iapologizeaheadoftimeforthelengthy"comment"butIdothinkyouwillfindIhaveincludedsomehelpfulinsights.IhavepalmoplantarhyperhidrosisandIhavetriedjustabouteverytreatmentoutthereincludingtopicalantiperspirants,relaxationtechniques,botoxinjections,andoralanthicholinergicmedications.TheonlytreatmentIhavefoundtobeeffectiveisiontophoresis.FortunatelyformeIdoseegreatresultswithiontophoresishoweverthetreatmentstillleavesmuchtobedesired.Itisverycomplicated,tricky,andsometimesevenpainful.Andmostimportantlyofallitisincrediblytimeconsumingandinconvenient.Ifindmyselfstressingoutwhentryingtoincorporatethetreatmentregimenintoanotherwisenormalandhealthylifestyle.Iamalsoabouttograduatecollegeandwouldliketospendalotoftimetravelinginthefuture,howeverIfeelchainedtothistreatmentregimenasitisimpossibletofollowwhileonthego.ObviouslyIthinkthedream"solution"foreveryonewouldbeaone-timeprocedurethatresolvestheissuepermanently.Andalthoughmiradryhasmentionedexpandingtheirproceduretocoverotherareasofthebodybesidesthearmpits,Ifeelthatitmaybealongwaysoff.Hyperhidrosisisacomplicatedconditionandapermanentsolutionwillbetrickytodevelop.Ithinkinsteadamorefeasibleandrealisticexpectationforhyperhidrosis(palmoplantaratleast)istomakeiontophoresistreatmentsmoreconvenientandeffective.Littlehaschangedaboutiontophoresisunitsfromwhentheyfirstwerecreated.Ithinkthishasmoretodowithalackofresearchthanitdoesnotbeingpossible.IfadevicecouldbedevelopedthatIcouldusewhilesittingathomeonthecouch,orinthepassengerseatofacar,orinahotelroomwhileouttraveling,Iwouldcallthatacureforme.Somethingthattakesonlyabout30mintoanhouraweekandthatdoesn'tfeelasunnaturalassittingwithhandsandfeetinbucketsofwaterforhoursonend.-Commenter

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IwantedtosendabigTHANKYOUtoallofyouthatassistedinthisconference.Asahyperhidrosissufferer,IcannottellyouhowgratefulIamthatthereisactionbeingtakenandattentionbeinggiventothisdiseasestate.AlthoughItrymyhardestnottoletHHimpactme,itdoeshaveapersistentpresenceinmydailylife.IteffectseverythingfromtheshoesIwear,todrivingacar,tomyjob(Iamasalesrepresentative),tothephysicalactivitiesIdecidetoparticipatein(imaginedoingYogawithprofuselysweatinghandsandfeet!),tomypersonalrelationshipsandsomuchmore.SoittrulymeansalottoseethistypeoninitiativebeingtakenonbehalfofallofusintheHyperhidrosiscommunity.Ifanyofmypastexperiencescanbehelpfultodiscussionsorresearch,I'mhappytoshare.I'mafemaleinmy30sandhavebeenstrugglingwithpalmar/plantarHHsinceaboutage12orso.Ithasonlybeeninthepast3or4yearsthatIhavebeenwillingtosharemyissueswithmyfamilyandclinicians.UptonowIhavetriedIontophoresiswithnoluckasitistimeconsumingandineffectiveforme.ItriedRobinulandexperiencedthedry-mouthsideeffects.TheonlyeffectivetherapyformehasbeenBotoxinjectionsinmyhands,whichofcourseispainful,hasout-of-pocketcostsassociatedwithitandonlylasts4monthsatatime,butiscertainlyworthit.Ihavenotyettrieditinmyfeetbutplantodosointhenextcoupleofmonths.IfIcouldofferanyinsightintowhattreatmentsarepromisingtomethatIhaveheardmaybecomingdownthepipelineitwouldbethetopicalbotoxormiradryforhands.Myhopeistofindatreatmentthatofferslonglastingresults.AsImentioned,BotoxinjectionsworkedverywellformebutIexperiencedbruisingforaweekfollowinganditwasquitepainful.IftherewasatopicalsolutionforthisIabsolutelythinkitwouldbenefitpatients.Ofcourse,thegoalforallHHsufferersisapermanentsolution,whichitseemsMiradryoffersforthearmpits.Iknowtherehasbeenclinicaltrialsconductedonanapplicatorforhands,soifthiswasasafepossibilitymany,manypatientswouldbenefit.BasedondiscussionboardsthatHHsufferersparticipatein,Iknowthatmanypatientsfeeldesparateforanyprogresstobemade.SoifanypetitionsorcommunicationwouldpushtherapydevelopmentalongIwouldlovetoparticipate.Again,thankyousomuchforallyourdedicatedworkonthis!-CommenterHere'swhatIwantthefutureofhyperhidrosistreatmenttobe:ThankyouformakingthiseventhappenandhighlightingthechallengesofHH.Mostpeopledon'tunderstandit.Ineverheardofbeforeitaffectedme.MysweatingstartedafteracourseofmedicationItookwhenIwasabout30.Itwascalledaccutane,hopefullythatdrugisnolongerinexistence.Thisdrugcausedmetosweatfromtheface,somethingthathadneverhappenedtomebefore.Ididalotofresearchanddiscoveredthatit'sararebutdocumentedsideeffectofthedrug.Itriedmanytreatmentsandwenttomanydoctors,fromneurologiststodermatologiststoendocrinologistsandnothinghelped.ImadetheunfortunatemistakeofhavingETS,thena2ndETStofixthefirstone.ETSbroughtaboutcompensatorysweatingthatI’vebeentryingtofindasolutionfor,forthelast20years.ThesweatingIhadbeforeisnothingcomparedtomypresentsweating.Ithasaffectedmylifeinaverynegativeway.HHisaproblemforeverysuffererbutthereislittledoubtthatpeoplethatsweatwholebodyhaveittheworst.Thesedaystherearemanytreatmentsforpeoplethathaveisolatedsweating,peoplethathavegeneralsweatinghaveveryfewoptions.Thisismysituation.IhavetriedmanytreatmentsfrompillslikeRobinolandthefamilyofthosedrugs.Theydon'tworkandhaveverylittlelastingeffect,nottomentiontheylosetheireffectovertimeandarealsoassociatedtoDementia.Ihavebeentoseveralspecialists,foraSympatheticinjectiontreatment,contactedadoctorinItalyforatreatmentofTopimaxthathasbeenhelpfulforsomepatientsandcurrentlyspeakingtoadoctoraboutahighlyriskyETSreversalsurgery.IcanconfidentlysaythatIhavetriedalmostanythingduringmy20-yearresearch.So,whatI’mlookingforisatreatmentforgeneralizedsweating.Wearetheonesthatsufferthemostasthereare

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nolasertreatments,nosuctiontreatments,noBotoxtreatments.I’vespentalargeportionofmylifesufferingwiththisandmyhopeandwishisasolution.-Commenter Iwanttothankyouforthesupportofhyperhidrosis.Ihavesufferedfromhhfromayoungageandithashadahugeimpactofmylife.Iwouldlovetoseea100%resultforasweatfreefuture.Mydaughterwhois3lookslikeshewillhavehhandireallyhopeshegetsbettertreatmentssoshecanliveherlifetothefullesttoo.Itsahorriblefeelingtohaveyourunderarmssoaked,yourfingersdripping,yourlegswetandyourfeetdrenched.Itisveryhardtosimpletasksandneedstobeaddressedsoallhhsufferscandonormaleverydaytasks.Wheretonextiaskwithtreatments.Iwouldliketogetinvolvedsomehowtocontributetoahyperhidrosisfreefuture.-CommenterAmgladtosharemystorywithyouandtoknowthatIamnotaloneinthisfightabouthyperhidrosis.It'sbeinggreatlearninghowyoutouchpeople'sheartwithyoutreatmentandinformationthatisrelevant.HereinKenyapeopledon'tknowmuchaboutyourorganisationandmoreabouthyperhidrosis.PeoplealwayslookatmeinaweirdwayifIdon'tshakehandswiththem.It'shardtoexplaintothemwhy.Ibelievewithyourorganisationandyourhelppeoplecanbeeducatedmoreaboutexcesssweating.WherecanIfindthesetreatmentsandproductsformyhandsinKenya?Idon'twanttobeashamedanymoremyselfesteemislowIneedtogetmyconfidenceback.Pleasehelp-CommenterIama32yearoldwomanfromthebeautiful"WineCountry,"knownasNapa,California.IhavemultipleformsofHyperhidrosis...butbyfar,themostdebilitatingformispalmaraffectingmyhands.Everythingyoudointhisworldyoumustdowithyourhands.OtherareasIamlessaffectedbyaremyfeet,armsandgroinarea.Althoughinthemostsevereofsevereconditionsmyentirebodycansweatheavily.IwishIcouldsaythatIamapersonfirst...thatI'mmorethanjusthyperhidrosis,butintruthnearlyeverythingIdointhisworldiscompletelyruledbymydisease.Now,ofcourseIliterallyammorethanjustbeingdefinedbymydisease,butmydiseasedoesindeeddefinemeinmanyways.MorethanIwouldliketoallow...morethanIcantolerate.ThisterribleafflictionhasbroughtmorepainandsufferingintomylifethanmostanyotherformoftraumathatIhaveenduredduringmyentirelifetime.LetmestartoffbysayingalittlebitaboutmyselfandwhoIam.Iamaverycreativepersoninside...buthyperhidrosishasstolenawaymyabilitytoconnectwiththeworldaroundme,andasaresult,Iliveaveryisolatedandlonelylife.Idon'thavefriendsandIdon'tgoout.IhaveadegreeinIllustration,butmyconditionmakesitnearlyimpossibleformetousemyhandsasanartist,soIamnotcurrentlyusingmydegreethatIspentmuchtime,moneyandhardworktoachieve.Ihavebasicallycarvedmynicheintotheworkforceofthesewing/seamstressworldthroughouttheyears.Igrewupsewingandhaveadaptedwaystomakedowithmyconditioninordertoscrapeby.Though,thefactremainsthateverysingleminuteofeverydayisastruggle...alivinghell.Letmetellyoualittlebitaboutmyownpersonallivinghell:Myearliestmemoriesofhyperhidrosisareasachild,roughlybetweentheagesof7-12yearsold.ThefirstmemoryIhavewithHyperhidrosiswaswhenIwas7yearsold.IwasbeingpickedupatmyGrandparent'shousebymyMomaftershegotofffromwork.ShewasborrowingmyAunt'sVolkswagenBugandithadafaultylockingmechanismonthepassengersidedoor.Sometimesitwouldlatch,sometimesitwouldn't.SomyMomremindedmetoslamithard,andIthoughtIhad.MyGrandparent'sliveduponahillwithawindingroadoffthemountainandtheywouldalwaysstandonthebalconyandwaveatusuntilwewerecompletelyoutofsite.WepulledawayanddownthedrivewaywewentasI

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waved.Asweturnedthecornerondowntheroadalittlebit,wetookthecorneralittletoohardandtheg-forceoftheturncausedmetobethrustagainstthepassengersidedoor.Thecardidnothaveworkingseatbelts,sobecauseofthefaultylock,mybodyweightpushedthedooropenandIstartedtoflyoutofthecar.MyMomcaughtmebymylefthandasweroundedthecornerandshetriedtoholdontomeastightasshecould,butmylittlehandsweresosweaty,thatIjustslippedrightoutofherfingersandflewoutofthecar.Irolledalongthegravelandwasscrapedupbadlybyroadrash.MyGrandpawhohadbeenstandingonthebalconywavinghadwitnessedthewholethingandstartedrunningdownthestairsanddownthewindingroadtousasmyMomstoppedthecar,gotoutandpickedmeupscreaming"Dad!.....Daaad!Assheheldmeinherarmsandrantohim.Iwastakentothehospitalandtreatedforroadrashandstillhavescarstothisday.Thisisaprimeexampleofhowpotentiallydangeroushyperhidrosiscanbe...andthemedicalcommunityatlargerefusestoagreethatitisanythingmorethanapettyannoyancethatdoesn'taffectanyone'sdailylifeinanymeaningfulway.Mysecondearliestmemoriesofhyperhidrosiswerearoundtheageof9,whenIstartedoutplayingvideogames.Icanremember*always*havingaproblemwithsweatyhandswhileholdingthecontroller.Iwasanextremelygoodplayer,(andstillamtothisday!),butIcanrememberasakidgettingsoangrywhenmyhandswouldslipoffthecontrollerrightbeforeIkilledabossordidx,y,orz.ItgottothepointwhereIstartedplayingwithcottongloveson,justsoIcouldholdthecontrollerwithoutitflyingoutofmyhands.Mythirdearliestmemorywasatage12ataDoctor'sofficegettingstitchesoutofmyankle.IgotintoabikeaccidentwithmyfriendwhilewewereridingfromherGrandma'stomyhouse.Webothatthesametimewenttopullontothesidewalkunawareoftheother.Mysweatyhandsslipped,sowecollidedandIendeduptangledupinmybikewithhersontopofme.Iwasn'tcryinguntilshepulledherbikeoffofmeandIlookedatmyankle...itwaslaidopenlikeafishfilletandbloodwaseverywhere.IendedupneedingstitchesandonthedaythatIgotthemtakenout...boyohboywasIandeveryone,includingmyself,inforasurprise.IwassittingupontheDoctor'stable,legsdangling,withthatsanitarypaperunderme,asisroutine.Iwastoldtobendmyrightleg,liftingmyinjuredfootupontothetablewhileIturnedmyupperbodyawayandwrappedmyarmsaroundmyMom.TheDoctorwasonlytryingtomakeittheleastbittraumaticformeaspossible,havingmenotlook,andofcoursebeinginthearmsofMom.Nobetterplace,right?Well,IwasstillscaredasallhellandallIrememberiscryingandscreaminginfearatthethoughtofwhatwashappeningtomyfootasIlookedtheotherway.ThefearofwhattheDoctorcouldbedoingtomewasenoughtocreateascenethatwillstickoutinmymindfortherestofmylife...andIbetintheDoctor'stoo.Luckily,IsurvivedthealienautopsyandwasconvincedtotakemyarmsdownfromaroundmyMom'sneck,(whomI'msureIhadbeenstranglingtheverylifeoutof).IwaspraisedforhowwellIdidandIlookeddownatmyfootwhichwasstitch-free.WhenIwenttoliftmylegbackoffthetableanddangleitdownalongsidetheother,revealedunderneath,wasaperfectimpressionleftonthesanitarypaperintheexactshapeandsizeofmybentlegandfoot...completelydrenchedinsweat.Theentireprocessprobablytook3minutesandinthattimeIsoakedthetable.No,thatwasdefinitelyNOTpee...itwassweat.AndI'llneverforgetit.Afterchildhood,whensocialappearancesdon'tmatterquiteasmuch,Ienteredmyteensandthat'swhentheconditionreallystartedtoaffectmysociallife.Upuntilthen,hyperhidrosishadnotaffectedmysociallifeinanyimpactfulway.WhenIenteredmyteenswaswhenthepressuretobeperfectandlikeeveryoneelsereallystartedtosettleonmyshoulders.Andboys,don'tevengetmestartedonboys.EverysingleboyfriendIhaveeverhad-IhavehadtogiveadisclaimeraboutmysweatyhandsandhowIcannotholdtheirhands.Luckilynoneeverletthatstopthemfromcaringaboutmeorstilltryingtoholdmyhand...butevenifitwasokaywiththem-itwasn'tokaywithme.

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IcannotexpresstheutterdisdainanddisgustIexperienceatthefeelingof"thetouchofmyownhands,"ifthatmakessense.Iliterallycannotstandthefeelingofmysweatyhandstouchingthings.What'smore-holdingsomeoneelse'shandactslikeagreenhouse,trappingallheatandairflowtomypalm,bysealingittoanotherheatsource(theotherperson'shand).Thoseare2ofmybiggesttriggers:heatandnodirectcoolairflowtotheaffectedarea.Asaresult,Ilivemylife"bythetipsofmyfingers."IfI'mdriving,I'mfinger-tippingthewheel.Youwillliterallyneverseemeatafull-palmargriponthewheel,unlessmyhandsarenotsweatingorIabsolutelycannotavoidit.Yes,Iknow...dangerous...butmypalmswillslipcompletelyoffofthewheelifIfullygripwhenmyhandsaresweatinganyway.Ifanything,thisisjustanotherexamplewhyHyperhidrosisundoubtedlyisaveryseriousandpotentiallydangerouscondition.Yetthemedicalcommunityatlargestillrefusestodeigntothinkso.AnythingIpickup,beitacuporaremotecontrol,Ipickitupwiththetipsofmyfingers.Makingaslittlecontactaspossibleinordersustainmygrip.Again,Iknow...soundskindofcounter-intuitive...butifIgrabwithfullpalmarcoverage-itwillescapemygripcompletelybecauseofthelargeareaofcontactIammakingbetweensaidobjectandthesweatofmypalm.Theleastamountofcontactfrompalms:thebetterchanceofholdingitIactuallyhave.Ithasbecomeanartform...ascience.Ihadtocompletelyretrainmyselfsurroundinghowtoholdobjectsinthismannerandnowitjustcomesassecondnature.Ialso95%ofthetimewillneverbeseenwithmyfingerstogethereither.Myfingersareamajorityofthetimealwaysspreadoutwidesothatnoonefingereverdaretouchesitsneighbor,becauseindoingso,bodyheatistransferredandanycoolingairflowisblocked.Ineedtheairflowingbetweenallfingersandallpossiblesurfaceareasofmyhandinordertoreceivemaximumeffectofboththecoolingairandthedryingeffectthatairhas.Again,Iamaffectedinotherareaswithhyperhidrosis,buttheabsoluteworstisandalwayshasbeenmyhands...handsdown!Thisallrelatestomyuttercontemptandsheerdisgustofthefeelingofthetouchofmyownhands.Somoreaboutthatnow:Afteraparticularlystrongsessionofsweating,(becauseitebbsandflowswithintensity),IproducewhatIcall"bathtubhands."Youknowhowyourfingersgetafteryoustayinthebathtubtoolong?-Allmushyandwrinkly?Wellminedon'tgetwrinkly-buttheydoindeedgetsoftandmushyjustlikethat.ItfeelslikeIcouldcutmyskinopenattimesbytheslightesttouchtosomethingroughorhard,becauseofthemushyandsoftstatetheconstantsweatputsmyskinin.Youwantmetogriptightandpullonthatchain?–Notunlessyouwantthefirstfewlayersofdermistogorightalongwithit!That'showitfeels.IfIamonthecouchwatchingTVIamsittingwithpalmsupandfingersspreadwithafandirectlyblowingonthem.Temperatureisahugekeyplayerintheissueaswellalongwithmyinabilitytothermo-regulate.IfeellikewhenI'matmyworstsweatingmoments,ifsomeoneweretoholdtheirhandaninchfromminethattheywouldbeabletofeeltheheatradiatingfromit.It'slikealltheheatinmybodyarisesfromthedepthsofmycoreandstraighttomyhandsfordesperateescape.Thatbringsmetomy2biggesttriggers:anxietyandtemperature.Ofcoursethesetriggersarenotmutuallyexclusive,becauseanysufferercantellyouthatnomatterwhatyoudoright,hyperhidrosiscanalwaysrandomlyrearitsuglyheadfornogoodreasonatall.HellI'veevenbeeninlineatagrocerystore,noticedmyhandsweren'tsweating,andthatrealizationalonewasenoughtotriggerthemtostartsweatinginstantly.Insituationswherestressoranxietyarises,hyperhidrosisisneverfarbehind.It'salmostlikeaswitchgetsturnedon.Inasituationliketheanticipationofaninterview,eventheaveragenon-suffererofhyperhidrosismaygetsweatyhands,butminebecomehyperactivetothepointwhereIwillliterallydripsweat.It'saviciouscycletoo,becausetheanxietyofthesituationmakesyousweat,buttheanxietyofsweatingmakesyoucontinuetosweatevenaftertheanxietyofthesituationfades.Heatisprobablymy#1enemythough.IfIgetwarm-Iwillsweatuncontrollably.ItbecomesmysoulfocustofindanywaytocooldowninordertostopthesweatwhenIgetwarm.SoIgoforexample:frombeinginablanket,togettingwarmandsweating,totakingofftheblanketandturningthefanoninordertocoolandstopthesweat.ThenIgetcold,soIputtheblanketbackon.ThenIstarttoget

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warmandstarttosweatagain.Sotheblanketcomesbackoffagain,andthefangoesbackon.ThenIgetcold,sofanoff-blanketon.Andthiscyclecontinuesalldayeveryday.Alwaysgoingfromoneextremetotheother.Thereisneveracomfortablein-between.Whichbringsmetothe"comeon,"ortheemergenceofsweatspells.Youcanalwaystellwhenit'sgoingtohappen...youcanfeelittinglingunderyourskinandthenyousay"no,pleaseGod...notagain,"butbeforethethoughtisevencompletedyoulookdownandbeadsofdewhavealreadystartedtoappear.Notalways,butalotofthetime,Ifeelkindoflikearushcomeovermyentirebodytoo.Likeaheatwavethatcrashesfromheadtotoe,thenmyhandsgethot,thenthetinglestarts,followedbytheflowofsweat.Iguessthisissimilartoa"hotflash?"Nowcontinuingon:IfI'mnotsweatingandIsuddenlyworrythatIwill...Iwillsweat.IfI'mnotsweatingandIhaveaninterviewtogoto,knowingIwillhavetoshakeahand...myhandswillsweatatthethoughtalone.Interviews...ohboyohboyaren'tthosefun.Iseriouslydon'tevenknowhowIgethiredwhenIbagajob,becauseliterallyallIamthinkingaboutishowtohidemyhandstheentiretimeaswellascontinuouslyself-monitoringhowIappearuntilIcanblastthehelloutoftherelikeabatoutofhellandneverlookback.EverysinglejobIhaveeverhadhasbeendictatedbymydisease.Myveryfirstjobwasat15yearsoldandIworkedatafabricshop.Itwasawonderfuljobforme,becausenobodywasabletonoticemysweatforthemostpartsinceIwouldconstantlybehandlingfabrics.NowIknowwhatyoumaybethinking,andno-Ididnotjustletmyhandssweatalloverthefabric.Ihavemoreintegrityandrespectforcustomersthantowillinglydothat.ButIwouldconstantlybewipingmyhandsasneededonmyclothesforupkeeptogetthesweatoffandthentherewouldn'tbeenoughonthemtonoticewhilehandlinganyfabric.Plus,thewayIbynatureofthejobhadtoconstantlyflapmyarmsallovertheplace,whenmeasuringandfoldingfabric,meantthatIgottogeneratemyownbreeze,thereforecoolingmyhandsandsendingthemintothe"coolinganddryingphase."The"coolinganddryingphase"iswhenyouareabletotakeyourhandsfromhot-to-coldviaabreezehittingthesweat,whichthenstartstocoolthesweatandstarttodropthetemperatureofanddrythehand.Thinkofitlikewhenyoucomeoutofahotshowerinwintertimeandthecoldairoftheroomhitsyouasyoustepoutallwet...itcanbeenoughtochillyoutothebone.That'swhatIcallthe"coolingeffect,"orthe"coolinganddryingphase,"ofcoolairflowonsweat.Thoughagain,thisisnota100%concreterule,becausetherearethosetimeswhenIwillstillsuffercoldsweatsandthosecanbedownrightpainful.Sometimesinordertostopthesweat,Ineedtochillmyhandstothepointwheretheyaresocoldthattheyactuallyhurt.Andiftheysweatinastatelikethat,theygetevenchillierifanyairhitsthem.Whichhurts...almostburnseven.KindoflikeIimaginefrostbitemayfeel.IfeellikeI'mconstantlygoingfromoneextremetotheother.LikeI'mconstantlyjumpingfromahottubtoafrozenlakeandbackagain.Anyway,Iworkedatthatfabricstorefor5yearsbeforeIwenttocollegetopursueadegreeinIllustration.Thedecisiontodosowasfueledbymypassionforart,buthonestlyitwasn'taverygoodidea,becauseIdidnotgivemyhyperhidrosisenoughpracticalweightinthedecision.Ifollowedmyhearttomydetrimentinstead.Athome,Icouldcontrolmyenvironmentandproduceart,butintherealworldit'sadifferentstory.Hyperhidrosissimplywillnotallowmetobeafulltimeartist,becauseIcannotcontrolthesweatingreliablyandforlongenoughperiodsoftime.Itookmanyclassesonlineandeventuallygraduatedcollege,butIcontinuedseamstressrelatedworkafterwards,soIcouldhidemyhands.InFall2016,thelocalfabricshopwentoutofbusinessandinMayof2017IlandedajobattheBottleRockFestivalhereintheNapaValley.IwasleadseamstressfortheDécordepartmentandsewedeverythingfromVIPentrancehangings,totrailercurtains,tothetrusscoversthatlinedthestagethatMarthaStewartcookedon.ThatwasmyfirstgigwhereIdecidedtorequestafanwhichbecamemyholygrail.Itwasn'teasyeither-it'snotalwayssociallyacceptabletoshowuplikeadivademandingyourownlittlefanwhereyousitintheshade,whilealltheguysdobackbreakingworkoutinthesun.

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ButitwasMay,hotashellinthe90+degreeheat,andwewereworkingoutdoors,soIusedthattomyadvantageandaskedformyfan.TheworkwassuchthatIhadlimitedinteractionwithasmallnumberofpeopleeveryday,soIwasabletokeepmysweatyhandsasecretinthattypeofscenario.Itwaswonderful,itgavemesomuchprideanditmademeseeafutureformyselfdoingbiggerandgreaterthingsthaneverbefore,butthelittlevoiceinthebackofmyheadalwaysremindsme"nope-can'tdothatwithyourhandsthewaytheyare."Somygreaterpotentialhasbeenstoppedshort,burieddeep,andwishesitcouldbreakfreeandshinebright.After2weeksthefestivalwasoverandIneededtofindsomethingelse.Istartedlookingformorelegitimateseamstresswork,whichisextremelyhardtofindinNapa,butinJulyof2017IfoundauniformplacethatservedLawEnforcement,Firefighters,andEMTfortheNorthBayinPetaluma.AssoonasIsawthatneedleinahaystackmyjawdropped,myheartsangandmyhandsstartedsweatinglikecrazy...(whichmeansyouknowIwasexcited).IwanteditandIwanteditbad...IdecidedthatIwasgoingtogiveitatry.AfterallIamaprofessionalhandmanipulatorafteryearsofexperiencecreatingsweat-hidingwaysinmostsituations.SoItookachanceandIdovein.Igotacallbackandaninterview.AssoonasIwalkedintotheplaceIwasalmostshockedathowmanyfanstheyhadsetupindifferentareasandIfeltliketheheavenshadopenedupandGodsaid"IloveyouChelsey."Becausenowhere...I-mean-NOWHERE...haveIwalkedintothedreamsetupformysecretburdenwhenwalkingontoapotentialjobsiteupuntilthatpoint.Thesepeoplewerefan-crazyanditwas*perfect*forme!!Theyevenkeptthethermostatat70degrees.IgottositrightinfrontofafanwhileIfilledoutmyapplication,whichkeptmyhandsmanageablydry-ish,soIatleastdidn'tleaveitasoppingmessandIwashired!Ihadalittleroominthebackwheretheindustrialsewingmachinewasandtheysetmeupwithmyownlittledeskfan.Nowmyboss,bydefault,wouldalwaysturnonallfansinthemorningbeforeIarrived,tothecirculationmodewhereitwouldconstantlychangedirection.ThoughassoonasIgotthereandsatinmychair,Iwouldclickthebuttontomakeitstoprotatingandwouldpointitstraighttothesewingneedlewheremyhandswouldbeanditwasadream.Iwouldgofromthesewingmachine,totheironingboardnexttomeandwhereverIwent-sodidthedraftofwind.IfImovedtotheleftwheretheboardwas-Iturnedthefantotheboardwheremyhandswere.IfImovedtotherightwherethesewingmachinewas-Imovedthefantowheremyhandswere.AndIwasalonebacktheremostofthetime,sonobodynoticedthiscontinualprocess.Eventually,onedayasshewaswalkingin,IwascaughtbymyBosswhileIwasturningthefanontotheareawheremyhandswereoneday.Ilookedupatherasshewalkedin,whileIwascaughtlikeadeerinheadlightsasIredirectthefan,butsheneversaidanythingaboutittomeevenifshedidthinkitwasalittleodd.Shedidmovehereyesfromminetothefanandbackatmeasshewalkedin,butIdidn'tvolunteertoexplainandshedidn'task.ButblessherheartandIwillneverforgether,becauseIfeellikesheeventuallynoticedsomethingwasupwithmeandthosefansorheatingeneral.Becauseonaslowweekwhenwedidn'thaveanysewing,IwastoldtohelpwithsomeinventoryonthecomputerandlowandbeholdshehadputawholenewlittlefanthereformewhereI'dbesittingatthecomputerallday.Therehadneverbeenafantherebefore.MyeyeswellupwithtearsasIwritethis,becauseeventhoughitwasunspoken,IfeltshecaughtonthatIneededthefanandshehelpedme.Whethersheevernoticedmyhandsweresweaty-Itrulydon'tknow...butifshedidshenevermentioneditordiscriminatedagainstmeforit.IlovethatladyandImissherverymuchandIpraythatmynextjobIcanfindanenvironmentascomfortableandwithpeopleasunderstandingandcaringasshewas.Thatjobwasveryhardonmeinsomeotherways,butIloveditbecauseofthecontrolledenvironmentandallthefans.Iwouldmeasurepolice,firefighters,andEMTandmakealterationstotheiruniforms,sewonpatches,etc.Attimesitwasveryintimidatingtohaveabunchofcopswalkingaround,especiallywhengettingupcloseandpersonalmeasuringthem,butIdidmybesttohidemyhands.ThereweresomerulesImade:whenmeasuringsomeone-neverturnpalmsup...orsomeonemightseetheshine.Whenpinningforalterations-neveraccidentallytouchacop'sbare

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skinandalwaystouchtheiruniformbytipsoffingersonly.Whenhearingacopapproachmyroomtobemeasured-alwaysgetyourhandsbusysoyouwouldnotbeobligatedtodropwhatyou'redoingandshakeahandastheyenteredetc.IwasalwaysabletodistractthemfromofferingahandshakethatwayalongwithmybubblypersonalitythatIinstantlyengagedthemwithinordertodistractthemandhavecontroloverthedirectiontheencountertook.Therehowever,wasoneincidentwithafirefighterthatstillleavesmefeelingbadwhenIthinkbackonit.ItwasonthedaythatIwasatthecomputer.Nowthesecopsandfirefightersweresonice,asniceastheycouldbe,sotheywantedtoalwaysmeetyouandshakeyourhandifpossible.UpuntilthatdayIhadalwaysbeenabletotrickmywayoutofahandshake,butnotthisday.Iwasatthecomputerandsawabunchoffirefighterscomeinalltogether.Iinstantlybecamenervous,becauseIknewthatIwouldprobablyhavetoshakeatleastoneoftheirhandssincethereweresomany.Icouldn'tdodgethemall.Andthethoughtofhavingtoshakealloftheirhandssentmeintoapanic.Myhandsstartedsweatinglikecrazy.Iturnedmyhand-fanupfullblast,butitwasn'tstoppingtheflow.Iwastoonervous.Sureenoughoneofthefirefighterscameuptomeatthecomputerwithanoutstretchedhandandsaid"Hi,I'mTony!"IknewIcouldnotshakehishandandIdidnotwanttotellhimIcouldn'tshakeitbecauseIhadhyperhidrosis...becausethenmybossandtheownermightfindoutandIwouldbeexposed.SotheonlythingIcoulddowaslookupathimandsay"nicetomeetyou,butI'msorryIwouldbegivingyouasweatyhandshakerightnow.Sonohandshakeplease."Andhesaid"oh...yanervousthatweareallinhere?"andIsaid"um...no?"andwasn'tsureifthatwastherightanswerornot,butthat'swhatcameout.Helookedgenuinelyconcernedandconfused...likewhattheheckisthisgirlhiding?Becauseusuallytheonlyreasona"normal,"person'shandwouldsweatisiftheyarenervousorbeingdishonest.SoIwasfreakingoutwonderingifmaybehethoughtIwasdoingsomethingIshouldn'tbeonthecomputerorsomething...thenIfeltlikeacriminal.AmomentlaterhewastryingonshoesacrossfrommeandIlookedoverathim,hewasn'tlookingatme...hewaslookingathisshoes,buthestillhadthiskindofsad/puzzledlookonhisface.Likehestillhadn'tfullyfiguredoutwhathadjusthappenedwithmeandwasstillstunnedbyit.Ifeltsobad...andIknowfirefighterslivetohelppeople.Ialmostwantedtosay"excuseme...canwestartover?Iactuallyhavehyperhidrosis...it'samedicalconditionthatmakesmyhandssweat."ButIcouldn't.Iwasparalyzedbyfear.Iregretfullyleftthatjobaftersometime,becauseofthedistanceIhadtotraveltogetthereandbecauseafterthatincidentIbecamemoreandmoreparanoidthatanotherlikeitwouldhappenagainandInolongerfeltassafeatmyjobdaytodayasIoncedid.Thenatureofthatjobwassuchthatyoucouldn'tavoidbeingsocialandphysicallyclosetopeople.Wegottoknowourcustomersbyname,becauseweservedlocallawenforcementandsawthesamepeoplerepeatedly.IknewthelongerIstayed,themoreaboutmydisabilitywouldberevealed.IworkedtherefromJulythroughOctoberof2017.WithindaysofquittingIhappenedtofindaseamstresspositioninmyhometownofNapa,soIjumpedonit,becausethatliterallyneverhappenshere.EspeciallyaftertheonlyfabricstoreintownthatIusedtoworkatclosedinfallof2016.IregretleavingthejobsewinguniformsinPetaluma,becausetheenvironmentIwentintonextwasthepolaroppositeofacceptingandaccommodating.IhadtheexactoppositeexperienceregardingfansatthisnewjobinNapawhereIlive.Itwasanotherseamstressposition,butunlikemypreviousjobofsewingPolice,FirefighterandEMTgearinalittleairconditionedroomallbymyself...Iwasinanindustrialsettingsewingrightalongside6otherwomenin1largeroomthatwasnextdoortotheindustrialwashingroom...anditwasHOT.ThefactthatnoneofthemspokeEnglish,savefor1whoslightlyspokeEnglish,madeitextremelyhardformetobeseenasahumanbeingandexpressmyselfasone.Inotherplacesyoucantalktopeopleandgetacquainted,findsimilarinterests,gettoknoweachother,buildtrustetc...butnothere.Iwouldjustgetstaredatandhearwhispersandgigglingbehindmybackallday,beingtheonlywhiteEnglish-speakerintheroom.Iwas

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alienatedfromthestartevenwithoutmyhyperhidrosis-nowthrowthatintothemixandIgottheresultingeffect.Longstoryshort,theindustrialoverlockmachinesIwassewingonwereonesthatIhadneversewnonbefore.SoIhadtobeshowninverycloseproximity,(andwithoutwords),whattodo.Thatmeanswithbodylanguageandalotofhandgesturingfromtheirandmypart.Andwhenthewomanthreadedthemachineandthende-threadedit,handingthethreadtome-itwasthenmyturntoshowthatIcoulddoit.WellthefactthatmyhandwouldbeindirectscrutinywithoutanyabilitytoexplainwhymyhandwasrunninglikeNiagaraFallssentmeintoapanic.ButIhadnochoice,soIthreadedthemachineandindeedleftsweatalloveritandyoushouldhaveseenthelookonherfacewhenshelookedatme,thenatthesweat,thenbackatme...Ifeltlikeshewasthinking"whatthehelliswrongwiththisfilthywhiteperson?"becausetothem-Iwasjustsomesweatyalienfarfromtheirunderstanding,letalonesomeonewithanyhumanityorpersonalityatthatpoint.ThelanguagebarrierwashardenoughandofcoursewhisperingandgigglingandstaresensuedaftermyteachinglessonwhenshewentbacktosewwiththeotherSpanish-speakingwomenbehindme.AftermyfirstdayIwenthomedeterminedtoshowthemthatIwasahumanbeing-andagoddamnkindhumanbeing.SoIspenthoursthatnightGooglingandpracticinghowtosayandaskcertainthingsinSpanish.ThenextdaywhenIshowedupformyseconddayofwork,Iwalkedinwithasmilesaying"hola,"toeveryoneandtheroomfellsilent.Everyonedroppedwhattheyweredoingandlookedupatmeinshock,like"ohmyGod-itcanspeak!It'sactuallyahuman!...Whatdowedo?"Iadded"comoestas?"...("howareyou?")asIwalkedtomysewingmachine.Twoorthreeoftheladiesansweredbackwitheyecontactandsmiles,soIknewIhadbrokendownthefirstwall...butstillhadalottoprove.AstimewentonIenduredmyconditionandforcedmyselftocontinuetoproduceworkanddealwiththelanguagebarrier.IcontinuedtolearnSpanishasbestIcouldandslowlygainedmorerespectintheworkroom.AfewofthewomenevenstartedtospeakalittlebitofEnglishtome,whichIdidn'tevenknowtheyknewanyupuntilthatpoint.ButIwasstillacompleteoutsidertothemandhadnowaytoshowwhoIwasbeyondtheworkIproducedandwhatevertheycouldtellaboutmebyjustlookingatme...whichwasn'tmuchwithmyhandsthewaytheywere.Oneladytoldmeoneday:"shesayyouworkisperfect"aftershehadaskedtheladyreceivingmyworkdirectlybehindmeifitwasokay.SoIknewthattheyrespectedmyworkatleast,butstillthefearofmyconditionandthestoiclookonmyfaceinhorrorofmyownbodyattimes,Iamsurecameoffasawkwardanddidn'thelpmyattemptstohumanizemyself.Icouldn'ttellthemhowIwassufferingorwhatIneeded.OnedayInoticedanolddustyfaninthebackcorneroftheroomthatlookedlikenoonehaduseditinyears.Ieyeditallday...wonderinghowImaybeabletofigureouthowtoacquirepermissiontouseit.Icertainlycouldn'tjustwalkupandgrabitwithoutaskingsomeone,whatifitwasforsomespecialpurposeandweweren'tallowedtouseit?WellonedayIsawoneoftheladiesuseitforabout15minutes.Iwasn'tsurewhyshedid,butthefactthatIhadseenitbeusedbysomeonegavemetheconfidencetouseitmyself.Shehadjustgotupandgottenitthatdaywithoutasking,sothenextdayIcasuallygotupfrommymachineandalleyeswereonmefromthemomentIstoppedworkingandgotupasIwalkedovertothefan.IknewwhatIwasdoingwouldnotbeunderstooduntiltheysawmepluginthefanandsitdown,soIkindofhadtotellmyself"screwit,"anddisassociatefromthesituation.Kindofliketherobberwhomafterrobbingabankmaycasuallywalkdownthestreettotryandlookinconspicuousasacopslowlydrivesbehindhimcheckingthemoutforanysignsofmisdeeds.Ifeltlikethatrobberwhohadnochoicebuttoswallowtheirfearandsay"screwit,"asIcontinuedtocasuallywalkstraightahead.Iwalkedovertothefan,pickeditup,broughtitbacktomymachine,satdown,pluggeditin,pointeditatmyselfandturnediton.IwasnervousbecauseitwasOctoberanditreallywasn'thotenoughtojustifyusingitinanyothernormalsetting.EveryoneelsewaswearingsweatersandhereIwasinashortsleevedt-shirtwithafanonme,butnobodymadereferencetoit-theyjustletmehaveitthatday.ThenthenextdayIdiditagainandbythethirddayIwasreallystartingtothinkthisjobmightworkout.I

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couldn'twaittogettoworkandsitinfrontofmyfan.Wellonthethirddayofmy"starting-to-be,"routineoneoftheladieswhocouldspeakabitofEnglishgotupandcameovertomeandsaid:"Chelsey...youhaveproblem,becauseyouuseeveryday."AndItriedtolaughitofflikeitwasajoke,butinrealityshehadcompletelycrushedmeandanysemblanceofconfidenceIhadstartedtogain.IwentfromfeelingnormaltofeelingthreeinchestallandIwassoashamedandembarrassedthatIneverusedthatfanagain.Twodayslater-Iquit.Youknow...rightaftershehadsaidIhaveaproblembecauseIusethefaneveryday,whethershemeantitasajokeornot,therewassometruththere.AndIrememberthinking"dearGod...Ican'tevencommunicatewiththesepeople,yettheyseerightthroughme."Iwashorrified.IfeltliketherewasnowayIwasgoingtobeabletohumanizemyselfandnowayIwasgoingtobeabletogettheaccommodationsIneededtobeabletoworkproperly.SoIranaway...Iquit.I'mthankfulforthatexperience,becauseitwasanethicallyeye-openingoneof"shoeontheotherfoot,"andIfeltwhatitwasliketobetheoddoneoutforachangewithinalanguagebarriersituation.Butitstillleftabadtasteinmymouth.ThatwasthefirsttimeIhadeverfelthumiliatedbymyconditionandcompletelypowerlesstoexplainitinaworksetting.Itmademeevenmoreawarethatinthefuture,ajobthatcaterstomyconditionisabsolutelyMANDATORY.IamcurrentlyunemployedasoflateOctober2017andamlookingforwhereverIcanfitin...butit'salmostimpossible.Myfabricstoreisclosedandnotanotherfor30miles.Everythingapersondoesinthisworld-theyhavetodowiththeirhands.Canyounameevenonejobthatwouldn'trequireapersontousetheirhands,saveforsomeraretradeImayneedthousandsofdollarsandyearsofcollegetoevenbegintoqualifyfor?Iliterallycan'tthinkofevenonejobthatexistsperiodthatdoesn'trequireapersontousetheirhands.Evenapersondoingvoiceworkhastoholdpapersoruseacomputer.IwouldhavegonebacktomyoldjobinPetalumainaheartbeat,buttheyhadalreadyfilledtheposition.Anyway,pleaseallowmetonowsharesomeexperiencesofhorrorthatIhaveexperiencedpublicly,outsidetheworkzone,duetomyHyperhidrosis.OnetimeIwashavingmyoilchangedandwhenIwenttopickmycarup,Itriedtopaywithmydebitcard,becauseusHyperhidrosisfolkdonotusecashifwecanhelpit.Wecan'tmessaroundtryingtohandlesweatymoneyandchange.It'sanightmareofataskevenjusttopayforsomethingwiththiscondition...yup...truth.SoIhandedovermycardanditwasdeclined.IknewIhadthemoneyinthere,becauseIhadjustputitin!SoIneededtomakeacalltothebank.Ididn'thavemyphone,soIwasforcedtousetheirsorwalk5mileshometomyhouse-nope.SoIknewIhadtousetheirphoneandinthebackofmymindI'malreadyplanningmyescapeasIasktouseit.WhereamIgoingtoholdmyhands?HowcanIpositionmyselfsothatmyfingertip-phone-holding-handcanbeblockedfromview?etc...thenIgoforthekill.Iask"mayIuseyourphonetocallthebank?"andIwasobligedandkindlyaskedtocomearoundthecounter.InmymindIscream"DearGod-NO!!Whyareyoudoingthistome?Can'tyoujustpassmethephonethroughthewindow??"butno...Ihadtofacemyfears.Ihadabout3secondstodosomethingaboutmyhandsasIwalkedaroundthecountertothephone.Ihadmywalletinonehand-andthetipofmyshirtfuriouslycrumpledupintheotherastocollectasmuchsweataspossiblebeforeIhadtograbthatphone.Imadeittothedesk,pickedupthephoneanddialed...makingsuretoswipeeachkeybeforeIliftedmyfingeroff,inordertowipeawayanysweatthatwouldbeleft(atrickIlearnedasakidinpianoclass).Iheldthephoneinonehandbythefingertips,butstartedtofeelmyhandsweatingsomuch,thatIknewitwasabouttodripdownmyarm...soIdecidedtodropmyhandtomysideandholdthephonebetweenmyheadandshoulderlikesomeonewoulddothathasnofreehandstoholditwith.ButIdidhaveafreehadtoholdthephonewith-somyanxietywasrisingasIself-monitoredmyselfalmostoutofthisworldandintoanotherdimensioncompletely.Theholdtimescouldn'tbeanylongerwhencallingabank's800numbereither!Ijustwantedthis5minuteholdthatseemedlike5yearstoendalready.ButbeforeIknewit,Ihappenedtolookattheladyandmakeeyecontactwithher.Aswemadeeyecontact,IsawherlookingintomyeyeswiththemostseriousandshockedlookonherfaceI'veever

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seeninaretailsetting,thendownatthedeskandbackintomyeyes.Ithentookmygazefromherstothedeskwhereshehadjustglancedinhorror,tonoticethatmypreviousphone-hand,(thatIhadabandonedinfavorofmyshouldertricktohidemysweat)wasdrip...drip...drippingalloverherdesk.IwasmortifiedandIinstantaneouslyslammedmywalletdownontopofthesweatpuddleandtriedtopretendlikeIhadseennothing.Iinstantlystartedtopanicandbecamehotter...andhotter.Iwastrapped!Icouldnotrun!Ihadbeenmetaphoricallycaughtbythecopandwasbeingarrestedandcuffed.I'mguilty,justtakemenow!AsIgothotterandmyheartracedfasterandfaster:myfacestartedtosweat,myfeetstartedtosweat,myarmpitsstartedtosweat,mybuttstartedtosweat,mylegsstartedtosweat...Ihadbecomeafull-onfountainofbodilysweat.AndifIwaswearingsunglasses,Iguaranteeyoutheywouldhavebeenfoggingupfromtheradiationofmypanic-strickenbodyheat.IthengotevenmoreparanoidandscaredbecauseasIself-monitored,IrealizedshemustbethinkingI'msomesortofabankrobberwithastolencardorsomethinginordertobesweatinglikethis.ThisisagreatexampleofhowHyperhidrosisaffectsyourmentalhealth.Itliterallydrivesmeintoparanoiddelusionssuchasmentionedaboveaboutwhatpeoplemightbethinkingofme.ItmakesmefeellikeIambeingdishonestwhenIamnot.ItattimesmakesmefeellikeIhaveactuallycommittedthosecrimes,likeIamarealcriminal,whentheyarealljustmadeupinmyhead.ThisparanoiaandfearofhowIamperceivedhashadintenseeffectsonmyself-esteemandhasattimeshadmequestionmyownsanity.Thatwasoneofthemosthumiliatingmomentsofmyliferegardinghyperhidrosisinpublic.Butwait:there'smore!Onetimeinmyteens,beforeIhadacar,Iwouldwalkhomefromschooleveryday.Oneparticulardayindeadsummer,Iwaswalkinghomeinallblackandwassweatinglikecrazy.Iwasholdingmoneyfoldedupinmyhandtobuysomewaterandintheprocessofwaitinginthelonglinehaddrenchedthe2dollars,(oneofthewaysIlearneditwaseasiertopaywithdebitcard).WhenIforkedoverthemoney,thetellertookitanddidadoubletakeashelookedcloseatthemoneyandasked"whyisitwet?"Iinstantlypulledfrommyrescue-bankofliesandreplied"oh-uh...meandmyfriendsjusthadawaterfightbecauseit'ssohotoutside,"andnervouslychuckled...butIwastheonlyonelaughing.Heclearlywasn'tconvinced.Afterall-Iwasn'twetfromwhathecouldsee.SoIhadfailedtobeahumanbeinginthemostsimpleofsituationsyetagain.AnotherincidentwaswhenIwasateenager,(beforeIhadlearnedalotofmyhidingtricksornottotouchanything).Iwaswithfriendsandweweregoingouttoeattogether.Iforgetwhere,buttherewasablackmattecounter,(theenemyofallliquidsbecauseitshowsupsoobviously),andIrememberrestingmyhandonitfull-palmedasIplacedmyorder.WhenIwasdoneordering,Iliftedmyhandbackoffofthecountertostepawayandleftagianthandprintofsweatwheremyhandoncewas.AseveryonelookeddownatthesweatandthenbackupatmeIliterallywishedatthatmomentthatIcouldjustdisappearandbecompletelyerasedfromhistory.IpretendedlikeIdidn'tseeit,(againtheforced-disassociationfromrealityinordertosurvivethemoment)andmyfriendsdidn'taskmeaboutit,butIknowtheymusthavethought"whatthehellwasthat?"Itwasaftermoreandmoretimeslikethat-thatIbegantowithdrawfromasmanypublicsocialactivitiesasIcould,infavorofstayinginmyownclimate-controlledenvironmentwhereIcouldhavethemostcontrolovermydevicesofrelief.WhenIbecameoldenoughtostayathomebymyself,IchosetonolongergowithmyfamilyonvacationstoHawaiiandmissedoutonmany,manymemoriesthatIsometimesregrettothisday...becausemostofmyfamilyisdeadnowandImissedoutonsomuchthatIcannevergetback.ButbeinginanenvironmentlikeHawaii,whichistheaverageperson'stropicalheaven,wasactuallyafull-onlivinghellforme.Ihatedeverysecondofit-becauseitwassohotandsohumidthatitmademesweatlikeneverbefore.SometimesIwonderifIshouldjustmovetoAntarcticasoIcangetsomerelief?AlsoduringfamilyholidayslikeThanksgivingandChristmas,wewouldallgatheraroundholdinghandstopraybeforeweate.Evenasyoungas14yearsoldIhadtostealmyGrandmaawayintoadarkcorner,longbeforedinnercame,andaskherifshecouldbetheonetostandononesideofme...andofcourse

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myMomwouldbestandingontheotherside.Theybothquicklylearnedtherules:DONOT....underANYcircumstance,holdmyhand.Instead,grabmebythewristandletmyhandshangfreetoupholdtheillusionthatIwasstillholdinghandsjustlikeeverybodyelseduringprayer.Itprobablydidn'thelpthefactthatIwasanemergingGothatthattimeeither,becauseIthinkalotofthemprobablythoughtIwasrebellingagainstthefactthatwewerepraying.Nope,Iwasn't...Iwasjusttryingtohidemysweat...andfrommyownfamilynoless.Thisisagreatexampleofhowshamefulthisafflictionis.Somuchso,thatyoudon'tevenwanttotellyourownfamily.It'sbecausewe'veseenandfeltthelooksofdisgustfromstrangersandwecan'tbeartofeelthatlookofdisgustfromsomeonewelove.I'veevenhadthatlookofdisgustfromDoctors...ohdearGodinheavendon'tevengetmestartedontheDoctors!!!Demonsfromhell,theyare...atleasttheonesI'veencounteredwhenitcomestohyperhidrosis.NONEofthemthinkitisaseriouscondition,NONEofthemarewillingtoadvocateonyourbehalfandaveryselectfewofthemevenknowwhatHyperhidrosisis,letalonetreatmentsforit.OnetimeIevenfiledanofficialgrievancewiththeheadofthehospitalIwasseenat,becauseofthewayIwasbelittledanddismissedbyasocalled"Doctor."TothisdayIstillseethewithfuriousrageandangerwheneverIrevisitthatmomentinmymemory.Itwasn'tuntilIwas28yearsoldthatIfoundoutwhatHyperhidrosisevenwasandthatitwasanactualthing.IhadfoundtheInternationalHyperhidrosisSocietyonlineandregisteredtosignuponthewebsite.Upuntilthen,Ihadbeenlivingmylifeinshameandsecrecy,growinguptoknowIwasarevolting,sweaty,freak.WhenIfoundoutHyperhidrosiswasanactualconditionIfeltlikemaybetherewashopeformetogettreatment.Ispentweeksandweeksdoingresearch,preparingmyselfthebestIcouldtounderstandwhatthisDoctorwasgoingtotellmeaboutmycondition,butitendedupbeingtheotherwayaround.IresearchedtreatmentsandthoughtIontophoresismightbeagreatoptionformeafterBotoxandSurgeryscaredmeoff.Ididextensiveresearchaboutwhatdifferentbrandswereoutthere,whatexperiencespeoplehavehadwiththemandwhatexperiencespeoplehadwithgettingthemcoveredbyinsurance,sinceIcouldnotaffordone.TheonlybranditseemedwascoveredwastheFischerbrandmodel,(whichwasthecheapestoneoutthere),andhadterriblereviews.ButIputitonmylistalongwithtwootheroptions:amid-gradeandahigh-grademodelwithgreatreviewsaswellasprosandconsofeachofthethreemodels.Icouldn'twaittoseewhatmyDoctorthoughtwouldbebestforme.IprintedoutmygoldenticketofinformationandIwassooptimistic,sogratefultobebookedforanappointmentandsohappywhenmyDoctorwalkedinthedoor.Andbytheway-whenImadetheappointmentandwasaskedwhatitwasfor-Ianswered"hyperhidrosis,"andwasaskedwhatthatwas.Mostpeoplesimplydon'tevenknowitexists...evenmanyofthoseofuswhohaveit.Anyway,itdidn'tevenmattertomethatIwaitedanhourand20minspastmyscheduledappointmenttobeseen.Icouldn'thavebeenhappierwhenshecameintotheroom.Sheintroducedherselfandstuckherhandoutforashake.Isaid"nicetomeetyou,butplease...nohandshake...Ihavehyperhidrosis."Andadded:"...That'sactuallywhyI'mheretoday."Isaidwithanoptimisticgrin.Shedroppedherhandwithaconfusedlookandsaid"oh...okay?"asshesatdownatthecomputeracrossfrommeandimmediatelystartedtyping.SheaskedmetotellheraboutwhatIwasexperiencingandIsaid"Ihavesufferedfrompalmarhyperhidrosisallmylifeandonlyrecentlyevendiscoveredthatthiswasanactualcondition.CanyoupleasetellmewhatiscausingthisandwhatImaybeabletodotostopit?"ShestartedtypingonhercomputerasIwaitedforaresponseandthenshesaid"so...youhavesweatyhands?"andIreplied"um...yeah."AndsheaskedmewhattreatmentsI'vetriedandIreiteratedthatIhadn'ttriedanythingyet,becauseI'donlyjustfoundoutafewweekspriorwhatHyperhidrosisevenwas.ButthatIhadresearchedtreatmentsandthoughttheIontophoresismightbegoodforme.IheldupthepaperandtoldherthethreemachinesIresearchedwereherewithprosandconsandwantedtoknowwhatshethought.IaskedherwhatIontophoresiswasandshesimplystraightupsaidshedidn'tknow,offeringnothingmore,andcontinuedtotype.Strikeone.

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Itoldher"wellwecouldlookattheinformationIhavehereandtalkaboutit,"andsheliterallytookthepaperoutofmyhand,didnotlookatitandplaceditonthedeskbesideherasshecontinuedtotypeaway.Isatinpolitesilencewaitingforhertorespondandresumeengagementwithme.Afewawkwardmomentslatersheliftshergazefromthescreenandglancesoveratmeandsaysshe'sneverseenamachinelikethat,she'sneverrequestedamachinelikethatandthatmyinsurancewasn'tgoingtocoverit.Striketwo.Iaskedher"howdoyouknow?Canyoupleaseatleasttry?"shegavemeanannoyedlook,didnotrespondandwentbacktotyping.Iasked"canyouwritemeaprescriptionforitatleastandtry?"andsherepliedfirmly"sure,butit'snotgoingtodoyouanygood."Strikethree.AtthatpointIwasangryandrealizedthatthissocalled"Doctor,"wasnotevenslightlyinterestedinhelpingme.Allthiswithintheshort3or4minuteswe'dspenttogetherintheroomaftermylongwait.Iwasverydisappointed.Sheseemedmoreinterestedinrushingthroughherappointmentwithmesothatshecouldcatchuponherotherlateappointments.ShemademefeellikeIwasnotimportant...(andonournextmeetingnotonlywouldshemakemefeellikethat-shewouldactuallysaythattome).SoatthispointIwasonlyinterestedingettingtheprescriptionfortheIontophoresismachinefromher,(whichyouhadtohaveinordertobuyoneinsuranceornot),andthenshefinisheduptyping,stoodupandgesturedmetothedoorsaying"okaywe'realldone!"Isaid"That'sit?...Whataboutmyprescription??"andsherepliedinanaggravatedtone"I'llgettoitwhenIcan."Iwasfurious.Isaid"whatdoyoumeanyou'llgettoitwhenyoucan?AndhowwillIevengetit?"andshesnappedatme:"you'llgetacall."Ithengrabbedmyiontophoresisinformationpaperthatshehadputbyhercomputer,gotupandleft.Iwascompletelycrushed.Allofmyhopesanddreamswerecompletelydestroyedinlessthan5minutes.Evenso,Iwaited...andwaited...andwaited.Afterthat,aweekhadsoonpassed,andguesswhat?–NOCALL.Whatasurprise.Istillthinktothisdayshecouldhavewrittenmyprescriptionrightthenandthereatourinitialappointment.SoIcalledthehospitaltofollowupaboutmyprescription,askingifIcouldtalktomyDoctor.Iwasgiventheroundabout"wewillpassyourmessagetoanursewhowillblahblahblahblah.."IdecidedIwasgoingtobemyOWNadvocateandmakeanappointmentwiththeDoctor,justsoIcouldtalktoherdirectly,guaranteed.Shewasbookedtillthenextweek,butyupIsurewaited.Andduringthatsecondweeksincemyinitialappointment,guesswhat...STILLNOCALL.Sothedayofmysecondappointmentwithher,thereIamagaininthewaitingroom...anhourpastmyscheduledappointment,beingrushedintotheofficewhereIwaitedanother20minutestillshebegrudginglyenterstheroomandlooksatmelike"whatdoyouwant?"andIsay"soit'sbeen2weeksandIstillhaven'treceivedanycallaboutmyprescription."Sherepliedshehadn'tgottoityet...uhYEAH...CLEARLY.Shesaidshe'llgettoitwhenshecan.Welltherewentthatgoodoldragerisingupinmeagain..."samesh*tdifferentday,"astheysay.Another"I'llgettoit"justtogetmetoshutupandgoawaywithnorealintentionofeverfollowingthrough.Isaid"no-youknowwhat...I'vealreadywaited2weeksforyoutowritethisprescription.IwanttoknowWHENIcanexpectyourcall,whatyou'regoingtodoandwhenyou'regoingtodoit"shereplied"look...yourcondition...isnotserious.Ihaveotherpatientstoseetodaythataremoreimportantthanyou."Andohmama...Iswear...ifIwouldn'thavegonetojailforitthatday,IwouldhavestraightupphysicallyattackedthissadisticWomanwhowasparadingaroundundertheguiseofa"caringDoctor."ButIknewthatIneededherhelp.InthatmomentIwantedtostrangleher,butIforcedmyselftopushbackthosefeelingsandspeakcoherentlywithouttoneorattitude...Isaid"please...I'msuffering.......helpme..."andshejustgrinnedwithdelightlikeshehadthefullpowertotorturemeatherwillandwaslovingeverymoment.Shesaid"there'snothingIcandoforyou."Andatthatmoment,Ihadsimplyhadit.Thatwasit.Isaid"youknowwhat?You'reright...youCAN'Thelpme...that'sright!Andthat'stheONLYrightthingyou'vesaid!"Itoldher"I'mthroughwithyouandI'mgoingtoseeaREALDoctorwhoactuallycaresabouthelpingpatientsandknowswhatthey'redoing!"andIwalkedoutofthatofficeandstraighttothefrontdeskwhereIaskedtofileanofficialgrievancewiththehospital.AndIfilleditoutin

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fullrightthereonthespot.IwastoldthegrievancewouldbereviewedandafewdaysafterIgotacalltocomeandtalkwiththeheadofthehospital.IsharedmyexperiencewithherandsheaskedmewhatIwantedhertodoandhonestlywhatIwasthinkingwas"dummy-whatdoYOUwanttodoaboutthis?"likedidshenoteventhinkthewaytheDoctortreatedmewaswrongintheslightest?Itoldher"Idon'tknowwhatIwantyoutodo-butIwantyoutodoSOMETHING."Isaid"somethingneedstobedoneaboutthis,shecannotgetawaywiththis,becauseIguaranteeyoushewilldothistosomeoneelse."AndshesaidshewouldbetalkingtoherandIneverheardanotherthingaboutitagain.Butshestillworksatthehospital,soshewasn'tfiredoranythingoverit.IhoweversometimeswonderthoughifIhadcausetosueformalpractice.I'llneverknow.Thatdaytheheadofthehospitaldidwritememyprescriptionrightonthespot,andthatiswhyIsuspecttheotherDoctorcouldhavedonethesameexactthing.ButthetraumathatIexperiencedoverthewholesituationleftitwithsomuchnegativeenergythateverytimeIlookedatthatprescriptionitjustenragedmeandbroughtmetotears,soitsatcollectingdust...expiredandIneverevenattemptedtouseit.She'sluckyI'maspoorasapauperwithoutanyknowledgeofmyrightsasapatientregardingwhathappened,orelseImighthaveindeedsoughtlegalaction.Butalso,theentireproblemofmyhyperhidrosisinitselfwasenoughtoshymeawayfromhavingthecouragetoevenbringthecasetolightevenifIlegallyhadarightto.Thatwastheendofmyattemptsattreatmentformydiseaseforthenext4years.Ihadbeensotraumatizedanddisillusionedwithmedicaltreatmentafterthat,thatIneverevenwenttotheDoctorforacheckuportheflu.Ididn'tstepfootinthathospitaloranyhospitalagainfor4years.Itwasn'tuntilIsawacommercialonTVonedaybackinDecember2017,(thefirstofwhichIhadeverseen)forHyperhidrosisthatIhadtheabilitytopursuehelpformyselfagain.UpuntilthatpointIhadacceptedthattherewasjustnohopeforme.ThecommercialIsawwasforahandandfootcreamcalled"CarpeLotion,"andIinstantlyburstintotears.IstartedthankingGodandholdingmyhandsuptotheskyasIcriedtearsofjoytoseepeoplelikemeforthefirsttimeinmylifegettingrecognitiononnationalTV!IorderedthecreamanddecidedthatmaybeinthelastfewyearsthingshavechangedandmaybeIcouldtryagainwithanotherDoctor.SoIgatheredupthecourageandmadeanappointmentwithanewDoctorinNovemberof2017.Shewasontime,butIwouldhavehappilywaited,althoughshestillrushedmeandhadlittleknowledgeofHyperhidrosisoritstreatments.ItoldherinshortaboutthehorribleexperienceIhadyearsagowiththeotherDoctorandthatthiswasthefirsttimeI'dbeenbacktoaDoctortotryandseekhelp.IbrokeoutintotearstryingtoconveythegripthisconditionhasonmylifeandthatIfeellikenoonewantstohelpme.ItoldherthatIwasalmostpatheticallydesperateandwasbeggingforhelp.IdescribedsomeofthethingsIgothroughdailyandItoldher"Doctorsdon'tthinkthisisaseriousconditionandIdon'tknowwhatIhavetodoinordertobetakenseriously."Itoldher"Youhavenoideathewaythisconditionisrulingandruiningmylife...youdon'tknowwhatit'sliketohavesomeonewipetheirhandindisgustafteryoushakeit,youdon'tknowwhatit'sliketobeatworkandhandsomebodyasoppingwetreceipt.."andthisdisgustedlookcameoverherfacelikethatreceiptthingwasjusttoodisgustingandshockingofavisualforhertohandlequietly.Clearlyifshewasacquaintedwithhyperhidrosisshewouldn'thavebeenshockedbytheimageofthewetreceiptatall.Butshehurtmyfeelingsbygivingmethatlookandshemademefeelashamed.IknewatthatmomentthatthiswasnottheDoctorformemovingforwardeither,butItriedtogetfromherwhateverIcouldbeforeIleft.Andsheagreedwithmethatinsurancecompaniesdon'tthinkit'saseriousconditionandprescribedmeDrysol.IgottheDrysol,butunfortunatelyitdidn'twork.Iwassupposedtoapplytodryhandsatnight,(hahaha...ironic...someonewithhyperhidrosishastohavedryhandsinordertoapplymedication)andinsertmydryhandsintosterilelatexglovesatbedtime.Wellmyhandswouldnotstopsweating,butItriedmydamnedhardesttogetthemasdryasIcould,appliedtheDrysolandstuckmyhandsinthelatexgloves.Wellanyonewithhyperhidrosiscantellyou-theabsoluteLASTthingyouwanttodotostop

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sweatingisshoveyourhandsinlatexwithoutanyairflow.SoasIlaidinbed,myhandsjustitchedastheglovesfilledupwithsweat.Iwasnotabletosleeptheentirenight,becauseitwassounbearablyuncomfortable.ItriedinthesecondnightandthethirdnightandgaveupcompletelyafterIexperiencedthesameresultsandthesamesleeplessnightstonoavail.Itdidn'twork.AndIhavenotbeenbacktoaDoctorsinceNovember.IamcurrentlytryingtheCarpeLotionIsawbackinDecember,butit'snotworkingeither.Althoughtheysaythemoreyouuseit-thebetteritworkssoIamgoingtocontinueuseuntilitisgone.Itisacreamyouapplyafterwashinghandsday,afternoonandnight.Youjustputitonandgo-nostainingofclothing/noneedforglovesonhands.Itgivesyourhands"grip,"butsofarhasnotstoppedthesweating,butI'veonlybeenusingitforaboutamonthandhaveathreemonthsupply.Sowewillsee,butsofarIdon'thavemuchfaithinthiseither.Ijustdecidedtokeepgoingandkeeplookinguntilsomeonewantstotakemeseriously,takeaninterestinme,andadvocateformyhealth.AndIthinkIhavefinallyfoundthatwiththeInternationalHyperhidrosisSociety.IamsodesperatefortreatmentatthispointthatIhaveactuallyfoundmyselfgettingmadatcommercialsIseeonTVaddressingotherpeople'sissuesthatIconsider"lessdebilitatingthanmyown."Ican'tcounthowmanytimesIhavescreamedatthetelevision"ohshutup!"whenIseethatCosentyxcommercialforeczemawherethey'realllike"seeme."Ijustgetsoupsetcrying:"whereisMYcommercial?!WhereisMY'feelme'"catchphrase?Ifindmyselfsayinginmymind"screwyouandyourlittlescab-trylivingwithTHIS!!"whenIseethatcommercial,becauseitjusttriggerssomethinginme.IamjealousandenviousandIwantmymoment...mycure.Ithinkthethingthathurtstheworst,morethanthedisgustedlooks,morethanthethingsIcan'tdobecauseofHyperhidrosis,isthewayIwasdismissedandbelittledbymyDoctorandhowthenextDoctorIsawprettymuchtoldmethesamething,onlyinamuchnicerway...thatthere'snohelpformeandthatnobodycares.ThatI'mjustonesmalldramaticjerkinthisbighugeworldwhoneedstogetovermylittle"non-issue."That'showIhavebeenmadetofeel,allofmyhopesanddreamsforabetterlife,crushed.AndIcannotexpressthejoyIfeltwhenIreceivedanemailfromtheInternationalHyperhidrosisSocietyon12/19/17,(thatIhadregisteredonlinewith5yearsprior),accompaniedbyalinktoathreeandahalfhourtownhallwithDoctorsandsufferersofthishorrificdisease.Iclickedthatlinksofastandohman,thetearsjustflowed...ohboydidtheyeverflowliketheriverofmyhands.ItwasabeautifulmomentandImustnothaveblinkedoncethatentirethreeandahalfhours.AndIcouldhavewatchedanotherthreeandahalf.IwatcheditinfullandthenIwatcheditagain-becauseitjust-made-me-feel-good.EverytestimonyIcouldidentifywith.Fromthefirstsufferersittinginthechaironstage,Maria,whospokeandthengrabbedthetissueattheendofherspeech...(notforhertears,butforherbeautifulhands),toLisaPieretti,Dr.KendalMarcus,DeeAnnaGlasier,andDr.ParisersaidthatWEaretheexpertshere.IfeltSOproud...sovalidatedandsopowerfulinthatmomentofconfirmation.AllDoctorswhospokesosincerely,eagerlyandshowedgenuinepassionandinterestinthislifedestroyingdiseaseabsolutelyblewmymind.TheInternationalHyperhidrosisSocietyhasgivenmenewhopewiththisstepforwardtothefutureinfightinghyperhidrosis.WhenyousaidyouwantedtoknowwhatIwanted...whatIwantedtoseeintreatmentandtohearfromme,Icriedlikeablubberingbabysohardthatmyeyeswereswollenthenextmorningandmyvisionwasblurry.TheworkIHHSisdoingforpeoplelikemeisnothingthattheworldhaseverseenbefore.Yourteamarethefirstlineofwarriorsonthebattlefrontofmedicine,forthefirsttimereadytofightforuswithpassion,vigorandpersistence!ForthefirsttimeDoctorslikethosebehindIHHSaretakingussufferersseriouslyandactuallygenuinelycare!Youshowthatyoulongtoadvocateforthehealthofpeoplelikemeandthatiswhatwehavebeenwaitingforallourlives.IthankGodfortheInternationalHyperhidrosisSociety,allitsmembersandallyouarestrivingtodoforthoseofuswhoaresuffering.Youaretrulytheanswertoourprayers.Thesnowballhasfinallystartedrolling.IwishtherewasaplaceformewithinIHHS.Youknow,asamatteroffact,thatsecondDoctorIsawaboutHyperhidrosis...Itold

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heronmywayoutthatIhopedonedayDoctorswouldstarttakingHyperhidrosisseriously...Itoldher:"whoknows...maybeIwillbeapartofthatrevolution?"andshesmiledandsaid"maybe."Itwaskindofapatronizing"maybe,"likeshedidn'treallybelieveitcouldhappenherself.Butlook-hereIambutafewshortmonthslaterandIamapartofthatrevolutionandIamsoproudandgrateful!Ifeelsostrong,sooptimisticandactuallyhavehopeforafutureoncemore!IwishtherewassomethingIcoulddootherthanjustsharemyexperiences.IwilldowhateverIcantohelpforwardthiscause,andifanyonefromIHHSneedsanythingfrommeatall,youdon'tevenhavetoask.YoujusttellmewhatitisandifIcandoit-yougotit.NowonthetopicofwhatIwouldliketoseeasfarasresearchandtreatmentsgo:Inmyperfectdreamworldtherewouldofcoursebeapermanentcure.Andacureyoudidn'thavetoriskdeathfor,liketheriskssurgerycarry.That'swaytooinvasiveformeandthecompensatorysweatingthingthatgoesalongwithit-notwillingtoriskthat.Idon'twanttotrademysweatyhandsforaconstantlysweatybuttorasweatyfaceetc.Ideallytherewillbeanon-invasivetreatmentoptionandapermanentone.Andmostimportantly-pleasedomoreresearchonthe*core*issueoftheproblemdeepwithinthenervoussystemofthebrain!ManytreatmentsaddressthesymptomsofHyperhidrosis,notenoughtreatingthecoreissuesdeepinthenervecentersofthebrainswhereitseemsthisproblemoriginatesfrom.Icantellyoufirsthand-somethingassimpleasthemererealizationthatyouarenotcurrentlysweatingisenoughtotriggersweating.LikemyexampleofstandinginlineatastorerealizingIwasn'tsweaty-onlytoatthatmomentinstantlystartsweating,becauseIstartedthinkingaboutit.Someofthesetriggersareclearlylinkedtoemotions/anxietyandarenotphysicallytriggered...thepowerofthebrainsetsitintofullflowintimeslikethese.AlsopleaseresearchingreatdepththeproblemmanywhosufferfromHyperhidrosishavewiththermoregulation-pleasedomoreresearchintothecorrelationbetweenbodytemperatures,andtheabilitytoregulatethemandhowtheyrelatetoHH.AlsotheeffectsandintensitiesofHHanditstreatmentsindifferentclimatessuchashotterareasopposedtocolderareas,asIfoundbeinginthehumidHawaiianclimatemademyconditionevenworse.Iwouldalsoliketreatmentoptionstobeaccessibleandaffordable,(IwillneverbeabletoaffordBotoxevery6monthsforexample).IalsowantDoctorstostartbeingeducatedaboutHyperhidrosisandforthattobeasroutineasanyotherconditionthat'scoveredinmedicalschool.Andinsurancecompaniesneedtostarttakingusseriouslyandcoveringourtreatments.Myinsurancewouldnotevencovermy$7Drysol.Iftheycancoversomeonewitheczema(rashonskin),thentheycancovermysweatonskin.IwouldlovetobeabletohavesomekindoftherapyforhandslikeMiradry,whichunfortunatelyisonlyforarmpitsatthemoment.IhavetriedDrysol,CertainDry,andamcurrentlyusingCarpeLotion.Asstatedabove,theDrysolandCertaindrydidnotworkandtheDrysolmademyhandsextremelyitchy-Ifoundmyselfscratchingmyhandsrawatonepointtheyitchedsobad.Alsothefactthatsomeonewithhyperhidrosiswasaskedtoapplyittodryhandsiskindofironicandmadeitnearlyimpossible.Ihaven'tbeenusingCarpeLotionlongenoughtoknowforsure,butafteramonthitisnotlesseningmysweat.Iwouldsaythatameaningfuldegreeofsweatreductionwouldbe80%.TothedegreethatIsweat-cuttingitbyhalfwouldstillgetmenowherenearafunctionallevelofsweating.Ineedmydegreeofsweatingtobecutalmostcompletelytohaveameaningfulimpactonthequalityofmylifeandsimpledailytasks.Iwouldalsoaskifpossiblefortreatmentsthatarenotpainfulandarenon-invasivewhereverpossible.Thethoughtofundergoinghundredsofneedlepuncturesononeofthemostsensitivepartsofmybodyeveryfewmonthsfortherestofmylifejustisn'tgoodenoughforme.Notonlythat-Icannotaffordthat.Idon'twanttotradeonehorrorforanotherandideallytreatmentwillnotriskcompensatorysweatingsuchasthesurgery.Idon'twanttotradesweatingfromonesourcetoanother.Backtothetopicofpain,IwouldbewillingtoundergoacertainamountofpainifitwasaPERMANENTsolution...suchasaone-timetreatment.NotaregularrecurrentpainfultreatmentlikeBotoxinjections.

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ForexampleIhearthatMiradrycanbesomewhatpainful,butthatit'seffectsarepermanent.UnfortunatelycurrentlytheyareonlytreatingexcesssweatingofthearmpitwithMiradry.Alsosideeffectsareimportant...withtreatmentslikeanticholinergicsyoumaynotbeabletopee,mayhaveextremelydryeyesandadrymouthwhichcancreateallnewailmentsontheirown.ReiteratingthefactthatIdon'twanttotradeoneailmentforanother.Ifeellikeiftherewasaone-and-doneprocessthatallmydreamswouldcometrue.LikeiftherewasaMiradrysolutionforallareasofthebody.Dailytreatmentscanaccidentallybemissed,leavingyouuntreatedandsuffering.Ijustwanttohaveaprocedureandmoveforwardwithmylifeleavinghyperhidrosisbehindforever.Isthattoomuchtoask?Hopefullynot.IfthereisanyhopeatallIhavefaiththatIamintherighthands.Andsoon,hopefully,therighthandswillbeonmeJNowjusttowrapupaboutthemultipleareasIsweatfrom:hands,feet,groin,armpitsandtherestofmybodymorethannormal.Butnoneareasdebilitatingasthesweatingfromthehandsandnoneareasbadorasfrequent.Isweatfrommyhandsallday,everyday.Myfeetareaclosesecond,butneverhasit*really*beenanissue.BecauseIcanalwaysputonsocksandshoesandit'snevergottothepointwhereitwouldseepthroughmyshoes.Mygroinisprobablythe3rdworstandluckilythatdoesn'thappeneverydayorbadenoughtoseepthroughmyclothes,butifIgettoowarmthingsdowntherewillgetdamp.4thinintensityismyarmpits...Ifeelthisistheleastannoyingone,becauseit'seasiesttohideformeandagainneverasintenseorfrequentasthesweatingofmyhands.NowinsituationslikewhenIhadtousethephoneatthecardealership,whenIwentintoafull-onpanicaftertheladysawmyhandsweatingonherdeskmylegsandfaceandarmsstartedtosweatalongwithmyothermainareas...butthisrarelyifeverhappens.Inoticemylegs,faceandarmsonlyjointhepartywhenIamhotandinanextremepanicoffear.IfIwereabletoridmyselfofpalmerhyperhidrosis,IwouldbewillingtolivewiththesweatingIalreadyhaveinotherareas.Again,thatisnottosayIwouldwanttotradethelevelthatmyhandssweatforthatlevelofsweatinginanotherarea...butnoothersiteofsweatingiseffectingmyabilitytolivemylifelikemypalmarhyperhidrosisis.Havingsaidthat,IwanttoagainthankeveryonefromIHHS,fromthebottomofmyheart-youtrulyhavenoideahowmuchofabeaconofhopeyourorganizationisforpeoplelikeme.Pleaseagain,ifyouneedanything,donothesitatetoask.Iamready.-CommenterIsufferfromplantarandpalmarhyperhidrosisaswellashavingsomeeffectsinmyunderarmsandcrotcharea.DuringtheHhsummit,manypeoplesharedtheirexperienceswithHhandhowithasaffectedtheirlives.Onethingthatwasn'tmentionedverymuchisthepainandphysicaldiscomfortitcauses,whichiswhatIwanttofocusoninmycomments.AsIwritethis,mybodyisinconflictwithitself.Myhead,core,arms,andlegsareperfectlycomfortableanddrywhilemyhandsandfeetareicecoldandwet.Ifpartsofmybodywerejustsweaty,thatwouldbeuncomfortable,butthetipsofmyfingersandtoesactuallyhurtfrombeingcoldforlongperiodsoftime.Thepainislikeanachecomingfrominsidemyfingersandtoes.Sometimesmyfingerswillbesosorefrombeingcoldforhoursthatithurtstotypeordoothertasksthatrequirefinemotorskills.Conversely,ifIamwarmwhilesweating,myhandsbecomeswollen,which,whilenotpainful,isstillveryuncomfortableandmakesithardtodothingslikeclaspinganecklaceorthreadinganeedle.Myfeetwillalsoswellfromsweatingtothepointwheremyshoesbecometightandmytoesfeelcrushed.TightshoesseemtoencouragethesweatingwhichmakesthecyclegetworsethroughoutthedayuntilIcangethomeandremovemyshoes.IhavetriedmanytreatmentsforHhthroughtheyears:Drysol,Botoxinjections,Iontophoresis,andRobinulForte(orallyandcrushedinthewaterofmyiontophoresismachine).Noneofthesetreatmentsproducedanylastingresultsformeand,infact,causedveryunpleasantsideeffects.ThesmallestamountofDrysolinatinycutorondryskinstingsterriblyanddoesn'tworkforme.Botoxinmypalms

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leftmewithextremecompensatorysweatinginmyfeetandgroinforseveralmonthsandonlyminimallydriedmypalms.Iontophoresisburnedmyskinatthewaterlevel,evenonthelowestsetting,anddidn'tproduceresults.Robinulmademymouthandthroatuncomfortablydryanddidn'tstopthesweating.MybiggesthopefortreatingHhisthatatreatmentcanbedevelopedthatcanstopthesweatingandnotproduceunwantedsideeffects.ThankyoutoeveryonewhoisworkingonthisprojecttofindasolutionandthankyouforgivingthoseofuswithHhrenewedhope.Youreffortsareappreciatedmorethanyouknow.-CommenterIwasanormalactivepersonuntil2012whenIgotthefirstof3pneumonias.Ineverreallyrecovered-somethinghappenedandnodoctorknowswhat.Ihavesymptomssimilartochronicfatigue(mostlyfatigue)butbyfarmyWORSTsymptomissweating—allovermybody,almostallthetime.Ihavetobringextraclotheswithmeallthetime;oftenhavetochangeclothesand,ifpossible,putmysoakingwetclothesinthedryer.ThereseemtobenogoodtreatmentsandIamdesperateafterseveralyears.MYLIFEHASBASICALLYBEENRUINEDB/COFHYPERHYDROSIS.Weneedsomeeffectivetreatmentstodealwiththis.-CommenterInoticedsomethingwasoffaboutmybodyaroundmysophomoreyearinhighschool.Iwasalwaysalittleshy,butevenmoreshybecauseinoticediwouldsweatmorethanusual.Inevertalkedtoanyoneaboutiteither.IstartedtoresearchsomethingsandfoundouticanuseclinicalstrengthdeodorantsbySecret,Doveandmanyothers.Istartedtousethemandtheyworked.Ifoundoutshortlyafterthattheywouldonlyworkforashortperiodoftimeandtheodorandsweatingwouldcomebackfullforce.IcontinuedtousethisoptionuntilIgraduatedhighschool.AfterigraduatedhighschooliwenttothedermatologistandtriedDrysolanditworkedforawhileandthenstoppedworking.IalsousedClindamycinforodorwhichdidn'tseemtohelpme,butIstilluseditbecauseididn'thaveanyotheroptions.IthasgottenworsesinceI'vegottenolder.Itstartedundermyarmsandeventuallystartedinmygroinandundermybreastsandit'ssoembarrassingandstressful.Iavoidmostsocialeventsanditrulybelieveistayedinanunhealthyrelationshipforlongerthanishouldhaveduetomenotwantingtostartoverwithsomeoneknowingihavesweatingandodorissues.Everyoneinmyfamilyisverysocialandoutgoingandiknowiwouldbethesamewayifitwasn'tforhyperhidrosis.I'mlookingintobotoxformygroinareaandMiraDryformyunderarmsandI'mhopeitworksforme.Iknowbotoxistemporary,butitseemslikesomethingthatcanhelpme.Ireallydon'tknowwhatI'lldoaboutundermybreast,butihopethere'sasuccessfulandpermanenttreatmentforthemallthatssafeformeoranyoneelsesuffering.I'mcurrently25yearsold,tryingtobeconfidentandliveabetterlifeformyselfandmytwodaughters.Iwouldliketoseepermanenttreatmentoptionsforallmysweatareasoraffordabletemporaryoptionsuntilthepermanentonesareavailable.Iwouldbehappywithatleastan80%reductioninsweat.Drysol(orHypercare)makesmyunderarmsburnandIhaven'tuseditinabout2years.Antiperspirantsdonotworkforme!I'mcurrentlytryingoutsweatblockandsinceitsmyfirsttimeithasbeenworkingthelast3daysorso,butihavenodoubtthataroundamonthfromnowitwon'tworkatall.Itseemslikeeverythingthatsnewandwearsoffeventually.I'vebeenusingantiperspirantssincehighschoolonandoffandiuseddrysol(andhypercare)forabout3years.Ishowertwiceadayputantiperspirantonatnightandinthemorningordeodorant.Iusedial

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antibacterialsoaporbodywash.I'msavinguptobeabletoaffordmiradryand/orbotoxformysweatareas.Iknownewtreatmentswilltakeawhiletogetapproved,butI'mprayingithappenssoonerthanithinkbecausethisaffectsmylifeeverydaynegatively.I'mgettingolderandiwouldliketolivethewayiwantnotthewayhyperhidrosiswantsmeto.Ialsospendmoremoneyondeodorantthantheaveragepersonunfortunately.Ihaven'tbeendatingsincemylastrelationshipandidon'twanttobecauseiwouldbesoembarrassedifsomeoneasksmeaboutmysweat.Igotagymmembership,butinevergobecauseiwillsweatsomuchandsmellinallsweatyareas.MostdoctorsinWisconsindon'tofferbotoxinthegroinorunderthebreast.Outof30officesicalledifoundonedoctorwhodoesinjectionsinthegroin.Itshouldn'tbethisway.Mydermatologistknowsihavehyperhidrosis,butshewillonlyhelpmewithmyunderarms.Iwouldliketobethebestversionofme.Iwanttobehappy,smiling,andmotivatedformykidsbecauseandmyself.Pleasehelpmeandotherswhostrugglewithhyperhidrosis.Thankyou!-CommenterIam33yearsoldandl'mfromLiberia,westcoastofAfrica.Iamsufferingfromhyperhidrosis,effectedareasarehandsandfeet.Thoseofuswho'resufferingfromhyperhidrosisfacesalotsofembarrassmentandshameeverysingledayofourliveswithoureducations,dreamsandtalentsallfadingawayleavingtearsinoureyes.Here'swhatIwantthefutureofhyperhidrosistreatmenttobe:Thoughwe'refacewithallthesetroublebutyougivesusavisionofbeingthebestfullyintegrated,Africaandglobalhyperhidrosisfreed.AndGodsentthisorganizationonsuchagreatmissiontoefficientlyprovidessustainableandsuperiorqualitysolutionsandservicestocreatevaluesforallhyperhidrosispatientsglobally.Ithinktheorganizationshouldinvolvedstakeholdersandotherhumanitarianorganizationaroundtheglobeinthefightagainsthyperhidrosis.Thatwillgivesushopeinrestoringbackourculturewiththesevaluesasourfoundation,andtheessenceofourculturewilldemonstratesitselfinfour(4)ways:*performancetodeliveroutstandingresults.*ownershiptodowhatisgoodfortheorganizationandstakeholders.*collaborationtoworkasateamandtargetabrighterfuture.*people,werealizedourpeople'spotentialandcreateroomforadvancement.Thanksforacknowledgingourhurtandlhopeforchangeinourlives.-CommenterIamnow58yearsofageandIhavesufferedfromGeneralizedHyperhidrosissincetheageof14,approximately.Isoughthelpfromfamilyphysiciansasateenagerbutreceivedonlytheadviceto"sweatitout."Theproblemwaschronicandseriousenoughthatitseverelydamagedmyemotional&socialdevelopmentatavulnerableage.YearslaterIwasprescribedPro-banthine(Propantheline)and,later,Robinul(glycopyrrolate)whichIhavetakenformanyyears.RobinulsuccessfullycontrolsmysweatingwhenIamatrest.HoweverithaslittleornoeffectwhenIamphysicallyactiveorunderanykindofstress,nomatterhowinsignificantitmightseem.ByphysicalactivityImeanthingssuchaswalkingseveralcityblocksorvacuumingacarpet.Iwouldliketomake3suggestions:1.MakeananticholinergiclikeRobinulthatworksmorepowerfully,thatworksevenwhenasuffererlikemeisnotatrest.IcantakehigherdosesofRobinul,ofcourse,buttheside-effectsaffectingmyeyesandstomachbecomeonerous.2.AlertmorephysicianstotheexistenceofGeneralizedHyperhidrosis.Manyseemtobeunawareofitandconsequentlydismissiveaboutit.Theyaremuchmorelikelytobeawareoflocalized(e.g.,palmar)hyperhidrosis.

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3. Please do more research on the subject of Generalized Hyperhidrosis. Even now, it seems that localized hyperhidrosis gets all the attention, probably because a number of treatment options already exist that can be tested and refined. -CommenterHyperhidrosiscontrolsmylife.Butnotforthebetter.Throughoutmylife,Ismelledofsweat.Itisawful,itcontrolsyourlife.Youarelookedatsodifferently.Igrewuppoor,didnotrealizewhatwashappeningtome.FinallywhenIgrewupandhadmedicalinsurancethroughmyjob.DoctorsIvisiteddidnotknowwhatmyproblemwas.Theywouldactuallysay,youdonotsmell.EvenasIwasdescribingmysituation,theyseemconfused.Yearslater,andstillsingle,IfoundadoctorinanarticleIreadaboutextremesweatingunderthearms.IlearnedofBotox.Iwentandgotseveralpricksonmyunderarms,andmysweatwentawayfor4months.Atacostof$1000.00.For4months,Ifeltalive.Justlikethatwaitress,whocomestoyourtable,andhasnoodorwhatsoever.Iwantedthatsobadly.Afterfourmonthsitallwentaway.Ittookmemanyyearslatertogetitagain.AsIneededtosaveanother$1000.00.Still,doctorsIwentto,didnotknowwhatIwasgoingthru.AndthoughttheBotoxwasgreat.Anotherbadday,Iwasupset,andwentbacktothecomputer,andtypedinHyperhidrosis.Anadcameup,miraDry.Iwent,theysaiditwillcost,$2500.00,allmysaving,butIwasdesperate.Itwastwosessions,Ididit,wasextremelyexcited.WillIbelikethatwaitress?Myunderarms,donotsweatlikebefore,butIdosweat,thedoctorsaidthatImightneedanothersession,foranother$2500.00.IusedtoslatherSecretClinicalStrengthdeodorant,aftermiraDry,IstillputonSecretClinicalStrengthdeodorant.Regulardeodorant,doesnotstoptheodor.Iaskedthisdoctor,ifmiraDrywillstopmybromhidrosis.Hedidnotknowthatword,andcalledthecompany,miraDry,aboutbromhidrosis.Thedoctorcamebackandsaidyes,thatmiraDryalsocontrolsbromhidrosis.Itdidnot.Idon'tknowifthisistherightterm-compensatorysweating.Butwhathappentome,aftermiraDry,wasthatIstartedsweating,alot,onmygroinarea,andbottocks.Iwasgettingalotofbacterialvaginosis.MyObgyn,whoisveryunderstanding,andknowsabouthyperhidrosis,isgivingmeantibiotic,Metronidazole.Iamalwaysworriedaboutlosingmyjob.Alwaysupset,whenpeoplelookorsaysomethingaboutmysmell.Ihopethatoneday,Pediatricians,MedicalDoctors,andnowthesenewoffices-UrgentCareClinics-areawareofHyperhidrosis.Andthatallwillbeabletohelpthoseaffectedwiththis.Itissoimportantthatpeopledonotgetsentaway.Thatthereisanavenuetogoto.-Commenter

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Hyperhdrosis has devastated our family. I have a son and a son-in-law as well as two young grandchildren who are affected by this. My son and son-in-law had severe palmar hyperhidrosis which impacted everything in their lives. They were unable use computers, which they did for their work, and it greatly impacted their abilities to have relationships with others. They were both so desperate that each had the ETS surgery, one at 15 years of age and one at 21 years of age. When my 21 year old son woke up from his surgery, he cried with relief that his hands were dry. This was cruel because he has since been devastated by crippling compensatory sweating and gustatory sweating. He is constantly wet from his waist up. He tries to eat only one time a day due to the impact of gustatory sweating. He is now working at home and is starting to be more and more isolated. My son in-law succumbed to many many Botox shots over his feet and body in desperation to stop his compensatory sweating. This did not help him. Perception drugs are of very little help, and have significant side effects. My boys have little hope and have psychological issues facing a future in which there is nothing out there to help compensatory sweating. Millions of people have had ETS surgery and are impacted by this. Please, please, take this to the forefront as it’s impact is so, so devastating and there is nothing out there to help. There is so many people who suffer so much more than the area of focus which seems to get so much more attention…axiallary hyperhidrosis. I am constantly looking for new help for them and I don’t see anything on the horizon. Please help us to have hope, as I have two young beautiful grandchildren who are also going to have the same problem. -Commenter