1

E P I L E P S Y. C O M

2 0 1 6 CO M M U N I T Y S U R V E YEpilepsy Innovation Institute (Ei2)

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E P I L E P S Y. C O M

INTRODUCTIONFrom September 8th to November 9th, 2016, epilepsy.com hosted a survey that asked the community the following:

What are the aspects of epilepsy that have greatest impact on patients’ lives?

Where should epilepsy researchers focus?

What are your biggest frustrations?

What is your biggest hope in the

next five years?

1,056

2

INDIVIDUALS PARTICIPATED IN THE SURVEY

1,056

3

E P I L E P S Y. C O M

WHO WERE THESE INDIVIDUALS?

41

NH11

VT2

46NY

MA 32

4RI

DE

CT19PA

51

24

2

NJ

9

WV

21KY

29

OH

39

MI

14

IN

33

IL

WI

22

12

IA

MN

17

19

MO

7

AR

ND2

SD2

NE 2

KS5

OK

8

5

MT

WY

1

CO

41

NM

3

AZ

28

NV

8UT

6

ID

5

CA

71

OR13

WA27

AK

2

HI1

9

ME

33VA

MD

52

4

DC13TN

28NC

10SC

24

GA

6

AL

2

MS

36

FL

11

LA

TX

75

Geographical Distribution of Respondants

61-75

46-60

31-45

16-30

1-15

# of Respondants

Most of you came from the U.S. At least one person from every state responded.

?INTERNATIONAL RESPONDANTS 69

DID NOT SAY

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E P I L E P S Y. C O M

99% of respondents

were people living with epilepsy or family members and caregivers

Responder Type

Seizure Frequency Diagnosis Distribution

Age Distribution

49%

23%

27%

1%

Caregiver

Other

Family Member

Person Living with Epilepsy

All seizure frequency types were represented in the survey.

76% of respondents identified as having been diagnosed with generalized or focal seizures.

1%

21%

15%

18%19%

25%

DailyWeeklyMonthlyYearlyOver a yearNo Response

Generalized Epilepsy

Focal Epilepsy

No specific diagnosis

Dravet Syndrome

Lennox-Gastaut

Tuberous Sclerosis

Other

13%

46%

30%

8%

1%1%

1%

Under 10 10-20 20-30 30-50 50+15% 21% 20% 32% 11%

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E P I L E P S Y. C O M

Which of the following aspects of epilepsy impact your life the most?(Summary Broken Down by Seizure Frequency)

WHAT DID THESE INDIVIDUALS SAY?

When asked to write down what aspects of epilepsy impacted individuals

the most, these were the most common words used:

As one might expect, the aspects that affect people living with epilepsy shift depending on how frequently the seizures occur.

Seve

rity

of s

eizu

res

Side

eff

ects

from

sei

zure

med

icat

ions

Unp

redi

ctab

ility

Lack

of a

cle

ar p

ath

to a

cur

e

Lack

of o

ptim

al tr

eatm

ents

Freq

uenc

y of

sei

zure

s

Com

orbi

ditie

s as

soci

ated

with

epi

leps

y

Inab

ility

to c

ontr

ol s

eizu

res

Lack

of h

ope

in fi

ndin

g a

cure

Exis

tanc

e of

alte

rnat

ive

trea

tmen

ts

100

90

80

70

60

50

40

30

20

10

0% o

f R

esp

on

den

ts w

ho

str

on

gly

ag

ree t

hat

the f

ollo

win

g

asp

ect

s o

f ep

ilep

sy im

pact

th

eir

liv

es

the m

ost

Seizure Frequency: Daily/Weekly Monthly Yearly/Over a Year

SIDE-EFFECTS

MEDICATIONSLACK

ABLEWORK

FEAR HAVING

SEIZURES

KNOWINGCONTROLINABILITY

DOCTORS

ANXIETY

DAILY

YEARS IMPACT

SCHOOL

DAY

LIFE

FAMILY

UNPREDICTABILITY

SOCIAL

MEMORYLIVE

TAKE

BEING

DRIVINGPEOPLE

COGNITIVE

CARE

LOSSHAPPEN

INDEPENDENCE

TIME

OVER

“Frustration of trying different

medications and their side effects with no

improvement.”

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E P I L E P S Y. C O M

When asked to write down what frustrated individuals the most,

these were the most common words used:

100

90

80

70

60

50

40

30

20

10

0

% o

f R

esp

on

den

ts w

ho

str

on

gly

ag

ree t

hat

rese

arc

hers

sh

ou

ld b

e f

ocu

sin

g o

n t

he f

ollo

win

g

Cur

ing

epile

psy

Seiz

ure

them

omet

er

Kno

win

g w

hen

med

icin

es

can

be s

afel

y st

oppe

d

Stop

ping

sei

zure

s

Impr

ovin

g qu

ality

of l

ife

Impr

ovin

g m

atch

ing

of

trea

tmen

ts w

ith p

atie

nts

Impr

ovin

g ea

rly d

iagn

osis

Und

erst

andi

ng th

e ca

uses

and

mec

hani

sms

side

eff

ects

Redu

cing

med

icat

ion

unde

rlyin

g ca

uses

in th

e lo

ng-t

erm

Dev

elop

ing

gene

ther

apie

s to

trea

t

can

help

now

or i

n a

few

yea

rs

Find

ing

new

trea

tmen

ts th

at

Trea

ting

com

orbi

dite

s

Dev

elop

ing

devi

ces

to b

ette

r

pred

ict s

eizu

res

Dev

elop

ing

alte

rnat

e

trea

tmen

ts (e

.g.,

diet

)

Researchers should be focusing their efforts on:(Summary Broken Down by Seizure Frequency)

When respondents were asked to rank what researchers should focus on, stopping seizures and improving quality of life were the top choices.

CURE

SEIZURES

MEDICATIONSBEINGPEOPLE

FUNDING

WORKSIDE-EFFECTS

TREATMENTS

DOCTORS

LACK

RESEARCH

AWARENESS

TREATMENT

KNOWING

NOTHING

CONTROL

MEDICAL

LIFE

TAKE

DRUGS

CAUSENEW

FIND

MORE

ENOUGH

MANY

KNOW

SEEMS

CBD

HAVINGFEEL

TIME

HELP

YEARS

Seizure Frequency: Daily/Weekly Monthly Yearly/Over a Year

“There is too much time spent worrying about a cure. There can’t be a cure until

we know the reason.”