Between March 12th and May 15th 2018, 1368 responses to the survey were received from 39 countries. Respondents were aged between 18 – 35 years. Almost 80% of the respondents were female, with the majority of the responses coming from the below disease areas:
- Multiple Sclerosis
- Myalgic Encephalomyelitis
- Chronic Pain
- Migraine
- Epilepsy
The top concern cited by respondents was ‘access to medication/treatment’, followed closely by ‘isolation’ and ‘stigma’. This isolation and stigma could be attributed to the lack of public understanding of brain disorders.
For young people living with epilepsy, however, the major concern is ‘access to employment’.
37% of respondents affected by epilepsy are working full-time, a slightly higher figure than the rate for neurological disorders as a whole (33%).
20% of respondents have obtained a Bachelor’s Degree, in-keeping with results for other brain disorders.
The highest co-morbidity seen was in migraine, which affects over 13% of respondents living with epilepsy.
Overall, respondents rated understanding of both brain disorders and their own conditions at just 2.5/10. A lack of understanding was also clearly shown amongst family, friends and employers.
Respondents with epilepsy rated public understanding of the condition at 3.9/10 – slightly better but still much room for improvement!
30% of respondents are members of an epilepsy patient support association but 51% of those who are not would be interested in learning more about one.