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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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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...

MY EPILEPSY JOURNEY BLOG

This blog is when I got first diagnosed with childhood juvenile absence epilepsy. When I turned 5 years old the start of it was when I was just ignoring my...

Waterlooville

The hurt inside

Why do I cry? why do I hurt?
I don't know where to start.
It never used to occur to me
that it would really break my heart.
Epilepsy is painful...

Nottingham

My epilepsy is something I’ve always tried to avoid talking about but recently I am embracing being more open about it. I had my first seizure at 14 when repairing my bike, it was a harrowing...

I have had epilepsy since I was 11 for grand mal seizures and after being on Sodium Valproate most of my life, I was having trouble conceiving . I was very naive - the obstetrician advised me to...

Jane writes about her son Matt:

Matt is a strapping 24 year old, 6 foot man with a zest for life. Matt is very sporty and has always liked to keep himself fit. He is a natural sportsman and...

Roseanna has had epilepsy since she was 21. She has focal seizures that are caused by a scar on the temporal lobe of her brain. Her seizures are mostly controlled by medication now, but she says...

Enniskillen

Victoria, 30, from Londonderry, had her first seizure when she was 13 years old, and was diagnosed at 14.

She has tonic clonic seizures, absence seizures as well as myoclonic jerks. At the...

Londonderry

Planning

When I was diagnosed in 2008 my symptoms were quite severe. I wasn't able to work and day-to-day tasks were a struggle. At this point I thought I might never be...

I was diagnosed with epilepsy when i was 6months old. I recovered at the age of 11 but it came back at my final year in high school, back in 2015. It was a bad year for me in that I lost my...

Nairobi - Kenya

“I had my first tonic clonic seizure in March 2018, when I was asleep in bed. I realised how serious things were when there were two paramedics standing over me in my bedroom putting an oxygen...

Northern Ireland

As an Epilepsy Action Accredited Volunteer, Kenny Borland is trained to deliver epilepsy awareness presentations. He has been volunteering his time since 2013.

Kenny first considered...

Curveballs

My autobiography is called 'Wanting to be Anyone but Me.' It took me several years to write and I finished it just before my fortieth birthday. I'm now forty one.  And the...

Farnham

I cannot really remember a time when I didn't have epilepsy. I started having seizures when I was 5, partial seizures which were pretty unpredictable. But it was part of my 'normal'. I did...

I had my first seizure when I was 14 years old; I'd never learnt what epilepsy was in the secondary school I attended so it scared me a lot when they kept happening on a daily basis and I couldn't...

Stockport

My greatest achievement is a happy family. I was diagnosed with epilepsy after having a foramen magnum decompression surgery for a chiari 1 malformation in March 2010. Tonic Clonic and Absent...

It's twins

My Epilepsy journey started when my close family and friends and also work colleagues had noticed me having absence/focal seizures (thought it was just anxiety) maybe twice a year since 2016..I...

Bexhill-On-Sea

Clinical abuse of Epilepsy Suffers

I am 67 years old and a ex teacher, therapist and counsellor.
All of that experience grew out of a mental health diagnosis of personality disorder...

London

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

My name is Barbara and I am Italian.

I am on the autistic spectrum, and due to violent traumas during my childhood, I am epileptic.

The episodes started in my teenage years and up to...

Italy

Planning

I did not have any pre-conception counselling before I fell pregnant with my first child. Louie was a surprise!

As soon as I found out that I was pregnant I...

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