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My Story

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Everyone’s epilepsy story is unique, and sharing your story helps others know they are not alone.

These are inspiring stories; of being diagnosed, over-coming challenges, fundraising and much, much more. Please share your story too.

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I was diagnosed at age 14 with adolescent onset epilepsy. Right away, the conversations in my immediate circle were all focused around how to help me feel "normal." My parents raised me to not...

Kansas

Experienced my first seizure at 9 years old as I was leaving an assembly. It was the most bizaar experience that I still struggle to describe, like every sensation you could imagine all happening...

Penrith, Cumbria

Hi all, Had epilepsy from young age. Have partial seizures/ absence about twice a month.am working .i am sporty playing squash /gym 2-3 times a week. Have had a couple of worse seizures when I...

Birmingham

I am a 37 yr female who at the age of 14 whilst carrying out a weekend job in a clothing store started to get jerks in my arms whilst serving customers.

This was particularly bad when I was...

Exeter

In January this year, I was admitted to hospital after suffering two seizures. It turns out I had CVST (a blood clot in the vein of the brain that caused a stroke).

At the time my...

Bristol

Pet Shop Boys

I'm writing because I've had a fantastic weekend however it's made me acutely aware of the...

So here's my story of my epilepsy.

Through childhood I had a few partial seizures that my parents were told I had epileptic tendencies but they didn't know if they would develop or not....

Newport

I love creating my graphic design pieces because it enables me to express both my passion for design and also my thoughts and emotions when I created my designs. When I create my graphic design...

London

I was once an active young woman; I loved my job as a care assistant, and I enjoyed walking, swimming and cycling. Slowly and surely, though, epilepsy robbed me of my balance; it became too...

Chelmsford

My name is laura I have always had epilepsy since birth when I was younger I never used to be able to do much apart from stay in the house then in my late teens I aloud myself to go out with...

Kidwelly

Sioned’s life became difficult when her son Elis was diagnosed with epilepsy at a young age. She was close to a break down, not sleeping and not allowing her son out of her sight. With the help of...

The dedication of the Epilepsy Action Harrogate branch and a team of paediatric nurses has paved the way for a new paediatric epilepsy specialist...

Harrogate

After losing one of our best friends on my stag do in 2017, myself and three friends decided to raise money for 'epilepsy action' in his memory.
Sean leanord was an extraordinary person, so...

Barnsley

I have always struggled with feeling groggy and tired and have gone to the doctors in the past with answers only telling me it was normal for teenagers. However the morning after my 22nd birthday...

Cheltenham

when I was a baby i had a febrile seizures i stopped breathing and turned blue my mom gave me mouth to mouth and by the time the EMTS arrived i stopped seizing . In pre k i would get angry and...

Saugerties

I am now the person I was always supposed to be. I am whole and my brain is running on oil. My ones call me slick. My neurotransmitters are protected and i can look at the stars without being...

Newry Co Down

Back in 2010 I was unfortunately diagnosed with epilepsy totally out of the blue. This came after suffering a seizure at night and prior to that suffering from absences/petit mal seizures over...

Southampton

Ena Bingham is a retired epilepsy specialist nurse. She was the first Sapphire Nurse in Northern Ireland. Stacie Sheeran was diagnosed with epilepsy in 2007. Together they volunteer at the Belfast...

Belfast

Ann lives in Leeds and volunteers at Epilepsy Action’s head office. She had worked for 9 years in Epilepsy Action’s membership team, which combined her experience in the NHS, as well as accounting...

Leeds

Sue Wild is an Accredited Volunteer for Epilepsy Action in Northern Ireland. Sue had been a university lecturer in Manchester, teaching business strategy and marketing for service industries....

Northern Ireland

Volunteering is not always about spending a day helping out in an office or at a charity fundraising event. It can also be about giving your time to speak out about an issue and make positive...

Lincoln

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