My Story: epilepsy

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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’m currently in my first year of an integrative counselling and psychotherapy diploma. Unfortunately this has been online due to the pandemic. I’m no stranger to working online as I did my MSc...

I was diagnosed with epilepsy 25 years ago at the age of 13, after having my first tonic clonic seizure in a maths lesson at school

Epilepsy has impacted my life in many ways, from drug...

Ellen Oxley has smashed the 50 Miles in February Facebook challenge – completing 50 miles in just 16 days and raising over £1000 in the process for Epilepsy Action. Her son Ryan died from...

When exactly is an appropriate time to tell people that you are gay? Why is it necessary? When is it a good time to tell them about your epilepsy? Is it any of their business?

Neither are...

I was diagnosed with juvenile myoclonic epilepsy (JME) when I was about 20 years old. Since then, I have been prescribed several anti-epilepsy drugs to help control my seizures. The first drug I...

Just like anyone else during these challenging times, I’ve been worried about getting the dreaded coronavirus.

Although epilepsy hasn’t been officially classed as making people more ‘at...

Fraizer is 7 and was diagnosed with epilepsy in September this year. He has focal onset epilepsy with focal to bilateral tonic clonic seizures. “He had his first seizure in May and it absolutely...

Harry was diagnosed with epilepsy in 2018, when he was 17. “I have focal seizures where my arm and hand locks up and is unable to move. I'm still conscious but unable to speak or anything. This...

Hello everyone. My name is Christina Marshall and I have complex partial seizures. I have 3 different types of seizures and I also have seizures in the night as well. Living with epilepsy for me has...
London

Aislinn Carlile volunteers for Epilepsy Action Northern Ireland’s Ballynahinch coffee and chat group. Located in a rural area, the group gives people affected by epilepsy a much-needed opportunity...

The Norwich Epilepsy Action coffee and chat group has shown an outstanding commitment to the cause of epilepsy. They have been a vital source of support for people living with the condition, their...

Norwich

Maureen Taylor and David Streets have been key in the development of the Sheffield Branch of Epilepsy Action, which was initially set up in 1989. It is now one of the most consistently best...

Sheffield

Tell us more about the day you had a seizure in public while pregnant and what a difference someone helping made to you.

6th March 2015 remains the worst...

“One time I had a seizure on the platform at London Bridge. Luckily, a member of the public was able to catch me as I was about to fall in my tonic clinic seizure. They protected my head,...

West London

Angel was diagnosed with epilepsy when she was 14, nearly four years ago. She has had very mixed experiences in public.

“My seizures are usually once a month and can be triggered by stress...

Becky’s first seizure happened in February 2018 when her son found her on the bedroom floor. Medical tests came back inconclusive and she was told it was a one- off. Six months later, Becky was...

Francesca was 14 when she had her first seizure out of the blue, on a sailing holiday in France.  She has multiple types of seizures, including tonic-clonic, myoclonic and absence seizures....

Ryan started having seizures as a young child, but went for five years without an official diagnosis of photosensitive epilepsy.

“It’s thought I developed my epilepsy as early as 7 but it...

Scotland

I was diagnosed with photosensitive epilepsy when I was 14, which really got me down for some time. I hated having seizures as they always made me feel awful afterwards, and each time I had one it...

London

I had my first seizure when I was around 8, I remember my mum telling me years later that they told my parents that I would grow out of it, as it was just a behaviour and attention seeking...

The first thing I remember is waking up, surrounded by my mum and a paramedic. I didn’t know what had happened. I couldn’t recognise my mum and I was scared. I looked at the paramedic hugged her...

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