Biggest risk to young people with epilepsy is lack of understanding

May 22, 2012 - PRLog -- New research published today by the charity Young Epilepsy reveals that young people are stigmatised, and their health and wellbeing are put at risk because many have a poor knowledge and understanding of the condition.

David Ford, Young Epilepsy’s Chief Executive said: ‘A major shift in awareness and understanding is the only thing that is going to improve this situation. We know that young people with epilepsy are getting a raw deal when it comes to education, employment and social interaction.’

‘This research reveals that people’s awareness is woefully low and as a result, they may inadvertently put young people at risk even though they are trying to do the right thing. The message for everyone is that a little understanding can go a long way towards making a difference to young lives with epilepsy.’

Young Epilepsy Ambassador Philip Martin Brown, who plays grumpy Grantly Budgen from hit BBC show Waterloo Road, said: ‘The research released by Young Epilepsy shows a belief I have long held: that there is still a great deal of stigma attached to a condition that affects over 112,000 children and young people aged 25 and under.’

‘I myself was diagnosed with epilepsy at the age of 19 and know firsthand the impact it can have on young lives. It almost cost me my acting career. That said, I still believe I am one of the lucky ones, but, as demonstrated by this report, there are many who aren’t so lucky. All young people deserve to be given the full and correct support and understanding in order to help them realise their own potential.’

Of over 1,000 UK adults who took part in the survey*:

•Only 1 in 3 would recognise going limp and dropping to the floor as a symptom of a seizure
•7 out of 10 people would recognise dropping to the floor and jerking around as a symptom of a seizure
•2 out of 3 people would not know that staring into space could be a sign of a seizure

When questioned about what they would do if they were with someone having a seizure:

•1 in 6 people would put something in the person’s mouth – a common misconception which can be dangerous for the person having a seizure
•42% would call an ambulance – which is not necessary unless it is the person’s first seizure or the seizure continues after 5 minutes
•1 in 10 said they would try and keep the person still – in fact you should not try and restrain the person at all, but you should support their head
•1 in 7 said they would not know what to do
•1 in 100 said they would throw water over the person

The survey also revealed widespread misunderstanding around social activities young people with epilepsy should not do.

•1 in 5 thought young people with epilepsy should not go to discos/nightclubs
•1 in 10 said no to using computer games
•1 in 10 didn’t think they should go to gigs
•More than 1 in 20 thought they could not go swimming or horse riding
•Around 1 in 30 thought young people with epilepsy should not:
  ◦Watch HD TV
  ◦Go to the cinema
  ◦Play in bouncy castles
  ◦Ride a bike
  ◦Use swings/slides or climbing frames
•Around 1 in 40 people thought they should not use a computer

David Ford said: ‘Many people try very hard to do the right thing but end up doing the exact opposite. We often hear stories of a young person with epilepsy being excluded from activities such as swimming or attending school trips because of concerns over health and safety.’

‘This approach just leads to the individual being isolated and can have a serious impact on their self confidence and mental health. A young person with epilepsy is four times more likely to have a psychological condition such as depression than someone with another common long-term health condition like diabetes and they are 50% more likely to underachieve at school. The truth is these problems can usually be avoided; if a few simple precautions are taken there is no reason why a young person with epilepsy cannot participate in all the usual activities their peers enjoy and this helps no end with their personal development.’

Epilepsy is the most common serious childhood neurological condition and affects around 112,000 people aged 25 and under.

Young Epilepsy has free information available to anyone that needs to know more about epilepsy including handbooks, seizure diaries and online videos. The charity provides training courses across the UK aimed at health, education and social care professionals. It also provides medical services plus operates a specialist school and college at its Surrey headquarters.


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*The research for Young Epilepsy was carried out online by Opinion Matters between 01/05/2012 and 04/05/2012 amongst a panel resulting in 1,007 adult respondents. All research conducted adheres to the MRS Codes of Conduct (2010) in the UK and ICC/ESOMAR World Research Guidelines. Opinion Matters is registered with the Information Commissioner's Office and is fully compliant with the Data Protection Act (1998).