Brainwave – The Irish Epilepsy Association – Shedding a light on epilepsy

To mark the 2nd annual European Epilepsy Day today, Brainwave - The Irish Epilepsy Association has announced results of a survey conducted amongst 464 people with epilepsy on their experience of stigma.

The survey shows that epilepsy stigma is a very real issue for many people with epilepsy today, with over half of all respondents (52%) reporting that they have experienced it. While people are more comfortable being open about epilepsy amongst friends and family, they are less so inclined when dealing with their employer or work colleagues.

Summary of findings:

• 29% or almost 1 in 3 people with epilepsy do not feel comfortable telling their friends and family about their condition.
• 20% or 1 in 5 people with epilepsy are not comfortable answering questions from friends and family about their epilepsy.
• 48% or almost half of respondents felt that friends or family attitudes towards them changed after they revealed their epilepsy
• 56% of people with epilepsy who are in employment are not comfortable telling their employer or colleagues that they have epilepsy.
• Half of all people with epilpesy responding who are in employment said that their employer or colleagues attitudes towards them changed after they were aware of their epilepsy.
• 52% of people responding have experienced stigma as a result of their epilepsy.
• 48% found the use of the label "an epileptic" to be offensive. Of this subgroup, 57% have experienced stigma as a reult of epilepsy.

The anonymous survey, consisting of 7 questions began on January 20^th and was conducted via SurveyMonkey. Respondents were sourced via Brainwave's membership, subscribers to Brainwave's e-newsletter and through Brainwave's social media channels.

Speaking in advance of European Epilepsy Day, Mike Glynn, CEO of Brainwave said "Previous research has shown that there are 37,000 people living with epilepsy in Ireland. The results of our national survey would indicate that for over half of them, stigma is an ongoing social reality. Despite advances in the treatment and care of people with epilepsy, many of the old myths around epilepsy linger on, with the result that people with epilepsy are still subject to negative attitudes."

"Brainwave is intent on making progress on the EU Written Declaration on Epilepsy, passed last September by the European Parliament which among other recommendations, states unreservedly that EU citizens with epilepsy should not be exposed to stigma and prejudice,"added Mike Glynn.

Further Information:

• Download a more detailed report of the findings below (pdf file).
• To read some of the comments submitted by respondents to the survey, click here
• Download the press release here.