EFNA represents 20 European and International associations across a wide variety of neurological disease areas such as multiple sclerosis, epilepsy, migraine and ADHD. Consensus among our members is that young people are currently under-represented in their associations. It is also felt that the issues facing young people affected by brain and brain-related disorders are not getting the public or political attention they should.
Those living with chronic illness face a number of additional burdens as young people. Often they are unable to complete their education, unable to take a place in the workforce, fear they will not find a romantic partner or have to watch their peers participate in activities they cannot access. Comorbidity between neurological diseases and mental health disorders such as depression and anxiety is common. These comorbidities increase disease burden and stigma – issues acknowledged across our membership.
In 2018 EFNA conducted a survey to explore problems faced by this age group, as well as their feelings around levels of understanding of their disorder and their engagement in advocacy work or patient groups.
Between March 12th and May 15th 2018, 1368 responses to the survey were received from 39 countries. 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
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.
You can read the complete survey report here: www.efna.net/efnayoungpeoplesurvey/
Specific results from the survey from Dystonia patients are available here: https://www.efna.net/wp-content/uploads/2018/07/Data_Dystonia_180704.pdf