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Epilepsy Still The "Lost" Condition Claims Epilepsy Action

20 January, 2003

Epilepsy remains a "lost" condition and a taboo subject, with attitudes towards epilepsy not keeping pace with advances in medical science, according to the Chief Executive of the charity Epilepsy Action, Philip Lee.

Mr Lee was commenting on the BBC's new drama, 'The Lost Prince', the first episode of which was broadcast this weekend on BBC One. The drama tells the story of Prince John, the young royal who was hidden away from society because of his epilepsy. It highlights how the condition was stigmatised at the turn of the twentieth century but people who have the condition are still facing prejudice today.

Epilepsy is one of the most common neurological conditions in the UK affecting one in 131 people. Advances in medical science have enabled approximately 75 per cent of those people to have their condition controlled by medication but attitudes towards epilepsy still prove a hurdle for many.

In a survey conducted by Epilepsy Action in December 2002, 96 per cent of people with epilepsy said that raising public awareness about epilepsy and increasing public understanding and acceptance of the condition was crucial to improving their quality of life. Nearly 60 per cent said stigma was the biggest problem facing people with epilepsy.

Some people with epilepsy are still discriminated against due to ignorance about the condition. Some are so afraid of negative reactions that they keep their condition from their own family, their employer or school. Many people with epilepsy are prevented from achieving their full potential and despite the Disability Discrimination Act, can still be denied access to goods and services like insurance, shops, restaurants and transport.

Mr Lee said:

"Stigma and its effects cast a long shadow. People are no longer locked away simply because of epilepsy, but the fear and lack of understanding live on. Epilepsy is still a taboo subject and often hidden away - it is the 'lost' condition. Stigma surrounding epilepsy has come a long way from Prince John's era and with help from Epilepsy Action attitudes are slowly changing but there's still a long way to go."