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Year of the Brain: a chance to tackle stigma

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    The European Brain Council has dedicated 2014 as ‘European Year of the Brain’. This presents an opportunity to address stigma and misunderstandings that persist around epilepsy.

    For patient groups and for companies like ours with a long-standing commitment to improving the lives of people with epilepsy, there is a range of ways to make a difference.

    This year UCB has supported scientists in producing, sharing and applying the latest scientific knowledge to deepen our understanding of the disease and how to treat it. For example, we have financially supported the production of a Nature Reviews Neurology 'Focus on Epilepsy' issue which explored current developments in epilepsy and clinical research.

    We are also supporting research on how online networks can support patients living with the disease.

    But we know that while research can move medicine forward, this must come in tandem with progress in public perceptions of the disease.

    Take the UK for example, where around one in 100 people have epilepsy. A UK survey (conducted in 2012 by ComRes for leading charity Quarriers) has shown that 94% of epilepsy patients believe most other people do not know a lot about epilepsy. More than three quarters of those surveyed said the general public makes incorrect assumptions about how epilepsy affects people living with the disease.

    It gets worse. A quarter of people with epilepsy have been accused of faking or exaggerating a seizure and most (69%) worry about how other people would react if they had a seizure in public.

    We support epilepsy awareness days and do what we can to improve understanding. Yet sometimes the most powerful advocates are patients themselves and their messages can be most effective in contexts where they may be unexpected.

    A new British film, "Electricity", is bringing the reality of epilepsy to a wide audience. Based on a book by Ray Robinson, the film could help to change attitudes towards epilepsy by introducing them to a rounded and sympathetic character living with the disease.

    "Electricity" is the story of Lily O'Connor, a young woman with epilepsy who suffers from grand mal seizures since her mother pushed her down the stairs as a small child. Lily, played by model turned actor Agyness Deyn, leaves her home in an English seaside town and heads to London to search for her lost brother.

    The film is dramatic and powerful, presenting epilepsy through a strong but compassionate character that refuses to be defined by her illness and strives to overcome obstacles such as epilepsy.

    The Epilepsy Society provided advice to the producers of the film, ensuring that it is an authentic and accurate portrayal.

    "Electricity" will be in cinemas this winter. Catch it if you can and encourage others to see it before the end of the 'Year of the Brain'.

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Posted by André Groenewegen, 13 November 2014 That is very nice news, thanks for sharing!