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What does your epilepsy look like?

26 March, 2014

Happy Purple Day! A new Epilepsy Action campaign launches today – entitled ‘What does epilepsy look like?’ People with epilepsy are being invited to share their photos and show the true diversity of people with the condition. Here, Peter Fox introduces just a few…

Epilepsy is often referred to as the ‘hidden condition’ – because when someone isn’t having a seizure, you’d have no idea they have epilepsy. Often, people in the general public might know several people with the condition – but they wouldn’t even realise.

Epilepsy can affect anyone, of any age, race, gender or religion. Even the term ‘epilepsy’ doesn’t refer to one condition – it is an umbrella term for over 40 different seizure disorders. It’s no wonder the public is confused; what does epilepsy look like?

A new campaign from Epilepsy Action launches today as part of celebrations for Purple Day, the international epilepsy awareness day. The campaign is called ‘What does epilepsy look like?’ It aims to both challenge misconceptions of epilepsy in the general public – and celebrate the wonderful diversity of different people living with it.

Epilepsy Action is calling for all people with epilepsy to share photos of what their epilepsy looks like. You can either tweet them at @epilepsyaction with the hashtag #purpleday, share them on Epilepsy Action’s Facebook wall or upload your photos to an online gallery.

This photo-sharing has already started! Below are just a few of our snapshots of what epilepsy looks like.

Ruth Bussey

Ruth's soon-to-be tattooRuth – now 30 years old – was diagnosed with epilepsy at just five. She has lived with seizures all her life and, like many, has encountered some ignorance about the condition.

Ruth says: “Epilepsy affected my schooling. It was the late 80s and early 90s, so little was known [about the condition]. Later in schooling I was allowed to sleep in some lessons as my medicines tired me out. So did the numerous absence seizures and tonic-clonic seizures.

“I have also found previous employers were ignorant to epilepsy – it made searching for a job harder. Thankfully I am back in work now!

“I am most proud of having my daughter and her not being harmed by my meds or seizures during pregnancy. Epilepsy Action has always answered any queries and is extremely helpful.”

Ruth brings something a little different to showing what her epilepsy looks like. A good friend of hers – Brad Benford – drew this beautiful picture as a representation of her epilepsy. It will soon be a tattoo – making sure Ruth’s epilepsy will never be hidden again.

The Warmingtons

George Warmington with his Purple Day packsThe Warmingtons are Corrin and Mark, and their children Ruth, George, James and Matthew. George has had epilepsy since the age of three. George still has active seizures, but the Warmingtons are trying everything they can to get them under control.

Corrin says: “Epilepsy arrived at our door out of the blue in November 2012. George takes three epilepsy medicines. He also now has a VNS implant and he is on the ketogenic diet.

“Epilepsy isn’t just about the person who has the condition. It is also about the people who know George, from healthcare professionals to school staff, family and friends. Throughout our epilepsy journey, we have heard: ‘Epilepsy? That’s not something I know much about.’

“We’ve had so much help from our paediatric epilepsy nurse specialist, Moyra Beattie. With her, we have learned to communicate epilepsy effectively to all the professionals involved with George.”

“Sometimes we feel so helpless alongside George in his epilepsy journey. We are delighted to be involved with Epilepsy Action to help them communicate epilepsy facts to a wider audience. It’s so important to dispel the myths and get people talking about the condition. About how to live with it, how it effects others and its impact on family. About available treatment options, support groups and research projects.

“In time, we hope that means that those around George will have more understanding, compassion and support for his life with the condition. George has amazing support at school. Staff members are keen to learn more about epilepsy.

“Purple Day gives us the perfect opportunity to distribute first-aid leaflets and to get everyone talking about epilepsy.”

Seen here, George stands with homemade 'purple presents' for his teachers at school – containing sweets and epilepsy first-aid cards. That way, everyone at school will know what to do when he has a seizure.

Charlea Graham

Charlea's bruisesMuch like Megan – the girl to launch this campaign with todays’ Epilepsy Action advertisement – Charlea was unlucky with one seizure. She injured her face – showing how violent some sides of epilepsy can be.

Charlea says: “This photo was taken a week after a seizure I had nearly two years ago. My face was so swollen that you can hardly tell I'm trying to smile! Unlike most of my previous seizures, I had no warning signs – like a headache or twitching. But over the four years I have had epilepsy I've learnt that no two seizures are the same, whether before, during or after.

“During this one, I collapsed in the bathroom – hitting my face on the radiator under my eye (only just missing my eyeball). I then hit my nose on the toilet seat and then my head on the concrete floor. We always joked our bathroom was small!

“Everyone thought I had been in a car accident as the rest of me was also covered in bruises. Two years on, I still have the lump on my head and a scar under my eye. I’ve also never forgotten the horror of waking up and seeing my face covered in blood and looking like Quasimodo.

“It’s important to challenge ignorance about epilepsy. At a few places I've worked, I've been called a ‘fake’. I have even left jobs because of the stress of it. During gruelling ‘return to work’ procedures, I felt constantly penalised for my condition – even though I've been honest about it from day one!”

Share what your epilepsy looks like now! Tweet pictures at @epilepsyaction, share them on Epilepsy Action’s Facebook wall or upload your photos to an online gallery.

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