2022 Epilepsy Stigma Survey

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* 1. What is your connection to epilepsy?

I have epilepsy

I provide care for a spouse, child or family member who has epilepsy

I don't have a personal connection to epilepsy

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* 2. How long since you were (or your loved one was) diagnosed with epilepsy?

Less than 1 year

At least 1 year but less than 3 years

At least 3 years but less than 5 years

At least 5 years but less than 10 years

10 years or more

None of the above

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* 3. After being diagnosed, how long did it take to share your story?

Less than 1 year

At least 1 year but less than 3 years

At least 3 years but less than 5 years

At least 5 years but less than 10 years

10 years or more

None of the above

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* 4. How do you identify?

Female

Male

Gender Diverse (gender non-conforming and/or transgender)

Other (please specify)

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* 5. What is your age?

Under 18

18-24

25-34

35-44

45-54

55-64

65+

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* 6. What is your highest level of education?

High School

College

Masters Degree(s)

PhD(s)

Medical Degree, Law Degree

Other (please specify)

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* 7. Please provide the race or ethnicity that best describes you

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* 8. Questions on Stigma

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* 9. Please share the following

	Yes	No
Do you see an epileptologist?	Do you see an epileptologist? Yes	Do you see an epileptologist? No
Are you concerned about SUDEP?	Are you concerned about SUDEP? Yes	Are you concerned about SUDEP? No
Are you concerned about stigma?	Are you concerned about stigma? Yes	Are you concerned about stigma? No
Has anyone ever talked to you about rescue medications?	Has anyone ever talked to you about rescue medications? Yes	Has anyone ever talked to you about rescue medications? No

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* 10. Please share the following

Your location (state, country)

Are you living with any other chronic conditions?

What types of seizures do you have?

	Yes	No
Do you feel ashamed of your epilepsy?	Do you feel ashamed of your epilepsy? Yes	Do you feel ashamed of your epilepsy? No
Do you try to hide your epilepsy?	Do you try to hide your epilepsy? Yes	Do you try to hide your epilepsy? No
Do you worry about others finding out about your epilepsy?	Do you worry about others finding out about your epilepsy? Yes	Do you worry about others finding out about your epilepsy? No
Do you feel you should be blamed for your epilepsy?	Do you feel you should be blamed for your epilepsy? Yes	Do you feel you should be blamed for your epilepsy? No
Does concern about being honest about your epilepsy prevent you from going to the doctor?	Does concern about being honest about your epilepsy prevent you from going to the doctor? Yes	Does concern about being honest about your epilepsy prevent you from going to the doctor? No
Does concern about being honest about your epilepsy prevent you from getting necessary tests?	Does concern about being honest about your epilepsy prevent you from getting necessary tests? Yes	Does concern about being honest about your epilepsy prevent you from getting necessary tests? No
Are you ever embarrassed by your epilepsy?	Are you ever embarrassed by your epilepsy? Yes	Are you ever embarrassed by your epilepsy? No
Does embarrassment keep you from talking about your epilepsy?	Does embarrassment keep you from talking about your epilepsy? Yes	Does embarrassment keep you from talking about your epilepsy? No
Does embarrassment keep you from getting services that would make your life easier (transportation, etc.)	Does embarrassment keep you from getting services that would make your life easier (transportation, etc.) Yes	Does embarrassment keep you from getting services that would make your life easier (transportation, etc.) No
Do you hide your epilepsy from co-workers?	Do you hide your epilepsy from co-workers? Yes	Do you hide your epilepsy from co-workers? No
Do you hide your epilepsy from those you date?	Do you hide your epilepsy from those you date? Yes	Do you hide your epilepsy from those you date? No
Do you hide your epilepsy from friends?	Do you hide your epilepsy from friends? Yes	Do you hide your epilepsy from friends? No
Do you hide your epilepsy from family?	Do you hide your epilepsy from family? Yes	Do you hide your epilepsy from family? No
Do attitudes about epilepsy prevent you from doing things you love?	Do attitudes about epilepsy prevent you from doing things you love? Yes	Do attitudes about epilepsy prevent you from doing things you love? No
Do attitudes about epilepsy prevent you from taking care of your health?	Do attitudes about epilepsy prevent you from taking care of your health? Yes	Do attitudes about epilepsy prevent you from taking care of your health? No
Do attitudes about epilepsy have an impact on your financial success?	Do attitudes about epilepsy have an impact on your financial success? Yes	Do attitudes about epilepsy have an impact on your financial success? No