For immediate release
May 2 2006

Almost all parents who have a child with epilepsy feel overprotective and worry about other people’s attitudes according to a survey published this week by the National Society for Epilepsy (NSE).

Also top of their concerns is the risk that epilepsy, the UK’s most serious neurological condition, poses to their child. A thousand people every year in the UK die of epilepsy related causes – 370 of those deaths are young adults or children.

The survey of parents was undertaken by NSE for National Epilepsy Week (May 14-20) to look at young people with epilepsy as they gain independence and move towards adulthood.

The survey asked parents how they thought epilepsy affected their child’s life, their education, their career and their personal life.

Nearly 90 per cent of parents thought epilepsy would affect their child’s career options and nearly three quarters thought the condition would also affect examination results. Statistics show that children with epilepsy frequently underachieve at school; 50 per cent achieve less than would be predicted from their IQ.

NSE’s senior press and pr officer Amanda Cleaver said: “ Epilepsy is a commonly misunderstood and stigmatised condition so it is no surprise that parents worry about what other people may think. With that comes overprotectiveness.

“My son was diagnosed with epilepsy at the age of three and my first thoughts at that time were how it would affect him in his teenage years, would he be able to drive, what would his friends think, would it affect him achieving at school. We were fortunate as he has now grown out of his epilepsy but nevertheless these were very real concerns for me that are clearly shared by the majority of parents.”

Epilepsy is most commonly diagnosed in childhood and in later life. It affects one in 242 under 18s in the UK. However some benign childhood syndromes may go away as the child grows up.

NSE has produced a fact sheet for young people with epilepsy which is also available by logging on to www.epilepsynse.org.uk

NSE is trying to raise awareness of epilepsy through a range of initiatives including its innovative schools awareness programme which recently received funding from the Roald Dahl Foundation.

Now NSE wants to let young people have their say about living with epilepsy. Starting in National Epilepsy Week and finishing in August NSE will be posting a number of issues on its website and polling their views. Log on to www.epilepsynse.org.uk/e-poll to find out more.

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