Understanding epilepsy16th December 2009
Dr Sallie Baxendale, consultant neuropsychologist at the Institute of Neurology and National Society for Epilepsy, asks if lack of public exposure to people with epilepsy is hindering public understanding of the condition.
Epilepsy hit the headlines recently with dancer Rita Marcalo’s attempts to induce a seizure, supposedly in the name of art.
One way she tried to do this – among other things – was with exposure to flashing lights but of the 450,000 people in the UK who have epilepsy, less than 5% will be affected by flashing lights.
Despite this, rarely is epilepsy featured in the entertainment business without a reference to flashing lights.
This message, however, does appear to be slowly filtering through but other myths surrounding the condition remain prevalent.
Many do not know the correct first aid procedure for a generalised convulsive seizure, or check for a medic alert bracelet before dialling 999 if they witness a seizure in the street.
Another myth is that while there may be salivation, excessive foaming is highly unlikely and complex partial seizures are very rarely correctly identified by people unfamiliar with epilepsy.
Because they are often mistaken for psychiatric disorders, people tend to move away.
Reflex epilepsies, seizures triggered by specific stimuli, are rare and while certain circumstances may make a seizure more likely, few reliably trigger seizures in the majority of people with epilepsy.
For those who live with epilepsy, it is so much about unpredictability. They do not know when and where seizures will happen.
Ironically, it may have been Rita Marcalo’s failure to induce a seizure that will teach people more about the condition than witnessing a seizure in public ever could.
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Monday 4th January 2010 @ 11:25
As a sufferer of complex partial seizures (mainly when eating) I am always ignored during/after having one. I know when I have because I feel sick immediately after. I have had funny looks or worse people at the same table ignoring the event, embarrassed! It remains a stigma and although I am open about it I find the public side of it very difficult to deal with - I dont know when I am going to have or indeed am having a seizure and just need someone to quietly show some concern or at least acknowledge it.
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