Progressin thePsychiatricand Psychologicaldimensionsof SED ... · dimensionsof SED: "Itisnotjustin...
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Progress in the Psychiatric and Psychological dimensions of SED:
"It is not just in your mind"
Prof. Antonio Bulbena-VilarrasaMD, PhD, MSc (Cantab)
Distinguished Professor of PsychiatryChair of the Department of Psychiatry U Autonoma Barcelona
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Progress in the Psychiatric and Psychologicaldimensions of SED: "It is not just in your mind"
1. Twoapproaches:“Hysteria”vsproperdiagnosis
2. Survey:FromEDSSymptoms toEDSExperiences
3. UpdateonPsychiatricaspects(neverONLYthem)
4. Towardsanewmodelofillnessunderstanding• TheNeuroconnective Phenotype(Neuro-Psycho- Somatic-Environment)
Contents
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The two approaches of the Psychiatric/Psychological dimensions of Ehlers Danlos S.
1. Oneveryclassicalandwidespreadbutunfortunatebywhichsufferershavebeen"accused"ofhysteria,factitiusorsimplyexaggeratedpeople;thishascreatedstigmaandgenerateddiscomfortandangerandrejection.
2. Themodernoneisbasedintherealpsychologicalandpsychiatricsufferingnowwelldocumented,bywhichsufferershavemorevulnerabilitytobecomeanxious(clinicallyrelevant)andtobemoresensitivetomanystimuli,notonlyexternalbutalsointernal(bodyperception).Despitethisdisadvantages,someadvantagesmaybeidentified too.
CLUE:Psychological(psychiatric)andPhysicalsymptomsMUSTbeidentified,respected,andtreatedattheverysame(andHIGH)level.
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Q31: What symptoms are you experiencing consistently?
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Q50: Has a present or a past doctor made any of thesestatements about your condition?
64% of respondents reported they had received negative orinvalidating comments from providers.• “Itisallinyourhead”(66.7%)• “thereisnothingwrongwithyou”(67.3%)• “Youshouldn’tbeinthatmuchpain”(62.5%)• “Youworrytoomuch(59.2%)• “Youshouldbehappythatwecan’tfindanythingwrong”(49.1%)• “Youarehypochondriac(29.8%)• “Youarelookingforattention(23.4%)
Thisreflectsalackofunderstandingofthecondition,aswellastheproviders’frustrationwithachronicillnessthatissocomplex.
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Total responses : 2544
Number of Countries: 26
Q18: What statements reflect your EXPERIENCE being diagnosed with EDS?
?
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PsychopathologyinJointHypemobility SyndromeEhlersDanlos III
Disorder Published evidence
• Anxiety Dis. ++++++• Mood Dis. ++• Personality Dis. +• Addictions +• Psychosis +• Eating Dis. +• Neuro-develop. Dis. ++• Cognitive Impair. +
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