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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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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...

I am epileptic, amongst other things, and my health is far from brilliant. But that does not define me. I am Ruth. I am a fighter. I am a warrior.

I was diagnosed with epilepsy at aged...

Hull

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

For Volunteers' Week 2018 we are celebrating the fantastic people that help us make a difference every day. Katie is from Leeds. She has been volunteering for Epilepsy Action for 2 years in the...

Leeds

I’m Raphael and I’m a normal happy 6 year old rebel. At times, when I'm asleep, I suffer from nocturnal seizures.

My 8 year old sister annoys me on a daily basis but are truly the bes of...

London

Epilepsy is a weird one for me. I’ve had grand-mail seizures since childhood, but I’m very lucky to only have them a few times a year if I manage my lifestyle. I have fits if I don’t sleep, this...

Leeds

I've had seizures since I was 9 months old. Mum was constantly being told they were breath holding attacks or just the temperature during summers. I've had them on and off ever since. I'm now...

Swaffham

It was August 2001 and I was 11 years old, due to start my first week of high school in 3 weeks.
It all started in the hall.... everything went black and the next thing I remember was waking...

Belfast

I was diagnosed with Epilepsy in May 2016, at the age of 20 years old. I was in my second year of University, I remember walking to a friends house, and the next thing I knew I was lying in the...

Redruth

This story is about my brother.

He started having seizure not long after he was born, which obviously was very scary to see a baby go through such a thing. At first the doctors said it was...

Essex

You have so many plans for the future and when they gradually start to fall apart you wonder if you can carry on.

I had my first seizure when I was 27. I'd started temping as an...

Andover

I was diagnosed with a epilepsy at the age of 7, a normal day I was sitting watching TV eating a baby bell and it happened. Full blown seizure. Never have in ever touched a baby bell since, even...

Surrey

Today is the day I can no longer say ‘…but it’s okay, I’m seizure free’ when explaining my condition.

I have been diagnosed with epilepsy for over 7 years. I am the first one to make light...

Bournemouth

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

Daniel shared his story for National Epilepsy Week 2017

Daniel was first diagnosed with epilepsy when he was seven years old. He has a mixture of seizures, including tonic clonic where he...

West London

I was diagnosed with epilepsy when I was two. My memories of being epilepsy-free are basically non-existent, so I when people ask me "What's it like to have epilepsy?" and "What if you didn't have...

Hyderabad

I have always had epilepsy so have never known anything else. It was caused by a stroke at birth so It's just part of my life. Having seizures growing up was tough, whenever an aura started I knew...

Pontypool

My amazing epilepsy specialist nurse is Helen Hodgson, at Southmead Hospital in Bristol, England.

For only 20 minutes every week, a patient of Helen Hodgson's would reveal the most...

Bristol

I was diagnosed with temporal lobe epilepsy a couple of weeks after my 40th birthday in 2011 when, completely out of the blue, I experienced a huge seizure at my desk at work.

Following two...

Croydon

It started as any normal day,
You had to change it, turn it grey
Pessimistically wanting it your way
And making sure that I had no say.

Quietly I was sitting, then a pain...

Newcastle Upon Tyne

I was diagnosed with epilepsy at 2years old. Almost died from SUED at age of 6 and 7. Parents would claim that I would stop breathing and turn purple.

There's no real reason behind the...

Washington DC

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