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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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Hello everyone

My name is Emma. I had my first epilepsy experience in 2011. Between then and 2013 it was debated on a number of occasions and I kept blacking out.

January 31st I...

Leyton

I have a form of Epilepsy called JME (Juvenile Myoclonic jerk Epilepsy) which I was diagnosed with in my late teens.
I had my first full blown seizure at 12 and my second at 15.
My...

Abergavenny

My life story
I was an extremely active child, walking and talking at a very young age, never sleeping a full night until I started school. When I was 7 I started to have tonsillitis which...

Bedford

In 1996 I was diagnosed with epilepsy. I didn't know much about epilepsy Butler quickly I tried many tablets to try and control my seizures eventually it was under control and by 1999 I was back...

Maldon Essex

Even though there is an American with Disabilities Act (ADA) protecting people with disabilities including epilepsy, there is still a lot of people in this developing world who still treat a lot...

san francisco sunset district

I have decided i want to take part in Tough mudder this year to help raise money and awareness for epilepsy. Last year i met the love of my life and we have been on an incredible journey and are...

Eagle

I had a few very seriously knocks to my head growing up from leading a active life. From age 18 I would get intense episodes of knowing what was going to happen in the immediate future. I was...

Wellington , New Zealand
Change a life
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At the age of 24 I gave up my masters degree for a job I thought I had always wanted, however within a few weeks I started going dizzy and absent.

After being diagnosed with stress I...

Bridgnorth, Shropshire

Oliver's first seizures appeared when he was around 18 months old and his mother, Moira, was pregnant with our daughter.  A few months later, he was admitted to hospital having had a sequence of...

Comber

My name is Rachel Skaug, formerly Rachel Kaalberg, and I used to have epileptic seizures as a child. My seizures started at four months old, which was in 1988, and lasted until I was 10 years old...

Bemidji, Minnesota

Jon shared his story with us for Volunteers' Week 2017. Find out more about volunteering for epilepsy Action.

Jon volunteers for Epilepsy Action because his son,...

Gabriel shared his story with us for Volunteers' Week 2017. Find out more about volunteering for Epilepsy Action.

I helped out at the Bradford 10k by giving water...

Bradford

Hi my name is Kate I'm 34 and I have been off my medication for a year now after being on it 20 years.

I am seizure free for around ten years. I have had the worst time of my life as I lost...

Stafford

Cathy shared his story with us for Volunteers' Week 2017. Find out more about volunteering for epilepsy Action.

Cathy set up the Epilepsy Action coffee and chat...

Maureen shared his story with us for Volunteers' Week 2017. Find out more about volunteering for epilepsy Action.

Maureen runs the successful Epilepsy Action Coffee...

Jane shared his story with us for Volunteers' Week 2017. Find out more about volunteering for epilepsy Action.

Jane Riley currently volunteers as a member of...

Kenny shared his story with us for Volunteers' Week 2017. Find out more about volunteering for Epilepsy Action.

As an Epilepsy Action Accredited Volunteer, Kenny...

In the prime of my life at the age of 22 my life was turned upside down when I started experiencing partial and tonic clinic seizures. After months of tests including neurological, heart and nerve...

Brisbane, Australia

Most people don't understand what epilepsy is all about, some think you have a 'fit' oh poor you have a cup of tea or a glass of water and you can get on with your day, this is so far from what...

Bracknell Berkshire

I had just graduated from university in 2005, I was hoping to move on to a teacher qualification when my had my first tonic clonic seizure. It didn't stop me and went back to university in the...

Croydon

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