EPILEPSY: What Do You Know About Epilepsy?

Don't Say Brainstorm - An occasional chat about epilepsy...

Instead of reviewing some TV or something, I'm going to ask a question: What do you know about epilepsy? Do you think you could talk for more than two minutes on the subject comfortably, wihout running out of things to say?

If you don't think you could you'd probably be in good company. Epilepsy sometimes seems to be the least understood of the most common 'hidden' medical conditions. Whilst most people may not exactly be experts in conditions like diabetes and asthma, they somehow seem more comfortable with them as subjects. I think this is partly because something like diabetes is a physical condition, and the majority of people know what it feels like to have a physical illness, even if only for a few days. Mental conditions don't give non-sufferers as much scope to empathise, leading to more awkwardness and less innate comprehension.

I have been diagnosed with epilepsy since my early teens, and have been on medication for it ever since (if Prufrock measured out his life with coffee spoons, I have measured mine with foil blister packs). I have what used to be called 'grand mal' epilepsy, and is now somewhat catchily called 'Tonic Clonic'. I normally become unconscious and have convulsions, often hitting the floor/pavement quite hard - it's unlikely that there'll be no bangs unless I'm already lying down. Sometimes I don't become unconscious, which is nowhere near as much fun. But it never happened to me as often as it can for other people, for which I've always been grateful; and over the years my medication has gradually become fine-tuned enough to more or less control the seizures, so I have about an average of two a year.

I didn't know much about epilepsy and nor did my family when I had my first fit - I suspect the majority of people who develop epilepsy are ignorant of the facts of it until reality makes them learn quickly. Perhaps more surprisingly, at the age of 30 I still don't know very much about epilepsy. Some people want to learn as much of the science as they can about an illness to try and understand it. I've never had much of a scientific mind and neurology as a subject isn't something I find interesting (although I find reading about historical treatments of epilepsy fascinating).

And so I completely understand people who are at a bit of a loss for things to say when I mention the fact I'm epileptic. Because I would probably be at a bit of a loss in their shoes. The fact is, as a country, people don't know a lot about epilepsy in Great Britain, and most of what people think they do know about it is probably wrong.

For instance - most people with epilepsy will not have seizures brought on by strobe lights etc. Strobe lights and other similar effects can directly cause seizures amongst people who have photosensitive epilepsy, but photosensitive epilepsy only accounts for around 4% of epileptc diagnoses. But the idea that flashing lights cause epileptic fits has so firmly taken root in the popular consciousness it is hard to dispel. Similarly, the idea of someone swallowing their tongue during a fit is thought of as being a common danger, but is in fact incredibly unlikely.

But because of a lack of basic education about epilepsy these myths (and many others) abound, and that wouldn't be too much of a problem apart from the fact that it is these kind of myths that inform what people do in cases of emergency. So we have people even today who believe that if someone is having a fit you should immediately put a spoon in their mouth to stop them swallowing their tongue. I once worked with someone who genuinely believed that this was the correct thing to do, and was shocked when I told him that the last thing you should do is put your fingers near someone's mouth if they're having convulsions because there is a greater chance that they will bite clean through your finger than they will swallow their own tongue. It is also commonly believed that someone having a fit should be held down. This once happened to me in a Whetherspoon's in Inverness (yes, I've collapsed in some glamorous places alright), and all it did was exhaust a couple of burly Scotsmen and give me an extra few bruises.

But those men were well-meaning (as was my colleague who had picked up the 'spoon method' from somewhere); they were trying to help someone very obviously in trouble using the best information they had. It's just that they didn't have very good information because they've never been provided with anything better than hearsay and old wives' tales.  The first aid tips for what to do if someone's having a seizure are very simple and don't involve doing a great deal at all (and are printed here on The Epilepsy Society's website). People's natural instinct is that they should do something.  But usually there's nothing to do but wait for it to stop.

There really needs to be a lot more public education about epilepsy, because the lack of knowledge at the moment is dangerous. Thanks to Vinnie Jones a lot more people now know about CPR, but epilepsy education is still in the dark ages. And as I said earlier, my knowledge of epilepsy would be just as poor if it wasn't for the fact I was epileptic. It's just something that isn't really very well known about, and people are unlikely to go and find out about it unless they have a reason to. It's not a particularly rare form of illness - 1 in 4 people is or knows someone who is epileptic. And yet some cultures don't even have a word for it.

I don't really know all that much about it myself however, apart from the things I've picked up over the years of occasionally thrashing about. I feel like I should practice what I preach. And so although I might not be interested in neurology or the science behind epilepsy, I've decided to make it an early year's resolution to devote one blog a month to looking at its place in society, culture and the NHS. It's time for me to start looking at the subject head on instead of just putting up with it, because if you don't raise your own awareness of something, how can you raise anyone else's?



For more information on epilepsy try checking out the websites of The Epilepsy Society and Epilepsy Action