

VIEWPOINT

Dr Sallie Baxendale

Consultant neuropsychologist, Institute of Neurology and National Society for Epilepsy

There are about 450,000 people in the UK who have epilepsy and for many it is a condition they try to keep hidden. But has this lack of public exposure hindered people's understanding of what to do if someone has a seizure? In this week's Scrubbing Up, neuropsychologist Dr Sallie Baxendale argues there are some dangerous misconceptions about the condition. Less than 5% of people with epilepsy will be affected by flashing lights Epilepsy hit the headlines last weekend, when dancer Rita Marcalo attempted to induce a seizure in the name of art. Regardless of the wisdom of the Arts Council in funding a woman to make herself ill for public entertainment, this case neatly illustrates one of the many myths that continue to surround epilepsy. Flashing lights According to the media, Ms Marcalo adopted many strategies to help bring on a seizure. She stopped taking her medication, drank alcohol and coffee, ate chocolate, deprived herself of sleep and subjected herself to flashing lights. Argh flashing lights! Rarely is epilepsy featured in the entertainment business without a reference to 'flashing lights'. People with epilepsy will not swallow their tongue during a seizure, but biting down on a hard metal object may well cause painful dental trauma



Rita Marcalo on epilepsy Read your comments In fact, less than 5% of people with epilepsy have photosensitive epilepsy seizures that may be triggered by flashing lights.

It has taken a while, but this message appears to be slowly filtering through. More often than not, warning messages prior to TV footage or posted on theme park rides nowadays simply refer to the presence of strobe lighting, giving people the choice whether to take part or not. Just 10 years ago 'epileptics' would have been advised to 'Look away now' or forbidden to ride. However, GPs will surely be overwhelmed this Christmas if everyone heeds the safety advice issued with the Nintendo DSi, that a doctor should be consulted before playing if you have ever had a seizure or loss of awareness. Other myths Unfortunately, other myths surrounding the condition remain prevalent. Many people do not know the correct first aid procedures for a generalised tonic-clonic (convulsive) seizure, and think putting a spoon in someone's mouth to stop them swallowing their tongue is an appropriate course of action, a myth frequently perpetuated on the silver screen. Excessive foaming remains in the domain of camels, not people



What to do in case of an epileptic fit People with epilepsy will not swallow their tongue during a seizure (how could they? It's attached), but biting down on a hard metal object may well cause painful dental trauma. Dramatic portrayals on the silver screen may also be responsible for perpetuating the myth that every seizure requires immediate medical intervention. Few members of the public check for a medic alert bracelet before dialling 999 if they witness a seizure in the street. Many people will have recovered by the time they reach the accident and emergency department and may face a long, frustrating journey home. 'Foaming camels' Stereotypical generalised tonic-clonic seizures are widely identified as seizures by most members of the general public. Interestingly most will say they saw foaming at the mouth, perpetuating another myth associated with the condition. It may be Ms Marcalo's failure to have a seizure on cue that teaches us more about the condition than a public seizure ever could

While some bubbling salivation may be present, excessive foaming remains in the domain of camels, not people. Complex partial seizures are very rarely correctly identified by people unfamiliar with epilepsy and are most frequently mistaken for psychiatric disorders or just plain weird behaviour. As a result, people tend to move away, often leaving the person during the seizure in a very vulnerable position. 'Unpredictability' Reflex epilepsies, seizures triggered by specific stimuli, are rare in the spectrum of disorders that cause seizures. While certain circumstances may conspire to make a seizure more likely, few reliably trigger seizures in the majority of people with epilepsy. And there's the rub. Living with epilepsy is as much about living with the unpredictability of seizures and not knowing when and where they might occur, as coping with the seizures when they do happen. In the end it may be Ms Marcalo's failure to have a seizure on cue that teaches us more about the condition than a public seizure ever could.

Have people been helpful to you when you experience a seizure or have they done some of the wrong things described in the article above? Have you tried to help when you saw someone appearing to have a seizure and what was the outcome? Name

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