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What does epilepsy look like?

What does epilepsy look like? That’s the question Epilepsy Action is asking the general public over the next twelve months.

Is epilepsy just childhood seizures? Is it like fainting? Is this a trick question because you can’t see it? These are just a couple of common myths and misconceptions that exist about the condition. Using photos from real people with epilepsy, we want to challenge people and question what they know about epilepsy.

Did you see what Megan’s epilepsy looked like in our advert in The Independent on 26 March 2014, or on facebook or twitter? Megan had a tonic-clonic seizure during the night and woke up, alarmed to feel her eye aching and swollen. Megan thinks that during her seizure, she banged her face on the windowsill near her bed. Megan doesn’t quite know what happened during her seizure. She can only make an educated guess at how the injury occurred.

GeorgeGeorge developed epilepsy at a very young age. Unfortunately he is not yet seizure free. This is despite having a vagus nerve stimulator (VNS) fitted and being on the ketogenic diet. On Purple Day George’s epilepsy looks like a basket of goodies for his teachers. Tellingly these treats include a seizure first aid card. George wants each teacher in his school to have a card. This will help them to help him when he has a seizure in school.

 

Imogen’s epilepsy looks like a pill box. Imogen wasn’t born with epilepsy. It is a result of being hit by a car when she was nine.  She has previously has VNS and brain surgery. Unfortunately, she is not yet seizure free and has never been seizure free.  So Imogen continues to take her epilepsy medicines every day, but hasn’t given up hope that one day her seizures will be controlled.

CharleaCharlea is another person left bruised by her seizures. She shared a photo taken a week after she had a seizure in the bathroom. She says: “My face was so swollen that you wouldn't believe I'm trying to smile!” She continues: “I collapsed in the bathroom hitting my face just under my eye on the radiator. I’ve also hit my nose on the toilet seat and my head on the concrete floor - we always joked our bathroom was small!”

Charlea had no aura before this seizure, so the seizure was very unexpected. She admits that over the four years she has had epilepsy, she has learned that no two seizures are the same.

As part of our campaign, we are asking you to share a photo of what your epilepsy looks like. We need to attract lots of different photos and experiences. Together we can really make people think ‘What does epilepsy look like?’ You can do this by sharing your photo on our webpage, facebook and twitter.

We’d also like you to join our Facebook page, follow us on Twitter and share all of our ‘what does epilepsy look like’ photos and messages with your friends.  You can also read Imogen’s full story in the Independent Purple Day supplement. You can catch Imogen’s story on Epilepsy Today Online. Keep an eye out for George’s story in June. George is part of our Seize control campaign.

Comments: read the 2 comments or add yours

Comments

People seem to think you have to collapse to the ground and shake to have epilepsy. I have absences and people do not seem to recognise these are a form of epilepsy. I am embarrassed coming out of seizures as I don't know what I have said or done. Nobody has ever helped me wherever i have had a seizure. Last seizure was at the bus stop I have gone to every working morning for the last three years. Seizure started as the bus arrived and bus had been gone by a few minutes by the time I became aware of what had happened. Not one person helped me. Wonder how they would have felt if I walked out in front of a car or bus.

Submitted by Dave on

Hi Dave
Thanks for your message. It’s such a shame that nobody helped when you had seizures. Unfortunately, as you say, many people only recognise the type of seizure where you fall to the floor and shake. A lot of people don’t understand about other types of seizure, or what signs to look out for. That’s why we run campaigns like the ‘What does epilepsy look like’ campaign to show people that epilepsy doesn’t always look how they expect. If you feel able to, talking to people you meet about what happens when you have a seizure can help to spread awareness too. Hopefully with greater awareness, more people will understand how to help.

Best wishes

Grace
Epilepsy Action Advice and Information Team

Submitted by Grace, Epilepsy... on