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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Hope is the thing with feathers that perches on the soul. - Emily Dickenson

Five years ago, a doctor told me that if I did not get my seizures under control, there was a good chance I would...

Portland, Oregon

My name is JJ I am 26 and an epileptic rugby player.

I was diagnosed with JME epilepsy at the age of 21. My journey started when in London Victoria Station, I was having dinner in the...

London

Hello!

I have lived in a world without Epilepsy and at the age of 20, my whole life changed....

Up until the age of 19 I thought I was a migraine sufferer, but the optician noticed a...

Grimsby

I was diagnosed with epilepsy when I was 7 years old however my experience with seizures date back to before I was even one year of age. The seizures of the time were discovered to be a symptom of...

Shropshire

“I wish my family and loved ones didn’t have to see me have seizures as it’s very scary for them. I’m then having to ask them what happened because I can’t remember. It’s not a nice...

“I used to be scared of the seizures, but my worst fear now is the side effects of the meds and condition.”

“I wish people could see what else happens to me outside of the 20 seconds to 2...

My one wish is for people to realise that even with epilepsy you still have the potential to be a "healthy" human and with the right mindset you can achieve anything. I feel having...

I wanted to write about my experiences of epilepsy and pregnancy to challenge the misconception that women with epilepsy should not or cannot have healthy children or look after them. ...

I had my first seizure at the age of 9 months and was diagnosed at 18 months of age.

It affected my life in every aspect from very early on. I was so poorly that I couldn't go to nursery or...

“Theo started to have what we could only describe at the time as ‘funny turns’. He would often describe a tingling sensation in his teeth, before losing control of his speech and muscle movements...

I was diagnosed with temporary lobe epilepsy 2 years ago and thank goodness I haven't had a seizure since I left hospital.

I am on vimpat medication twice daily, 100mg morning and night....

Ireland

To begin, I must go back to my early teenage years, when I started having unexplained accidents that I couldn’t remember the cause of.

At the time I had my ears checked for any inner ear...

Cullompton

"About a year ago my life changed completely. Unfortunately, after 13 years seizure free, I had to deal with the return of my epilepsy. For whatever reason. Easter time last year, I’d had a few...

"About a year ago my life changed completely. Unfortunately, after 13 years seizure free, I had to deal with the return of my epilepsy. For whatever reason. Easter time last year, I’d had a few...

I was diagnosed will epilspsy at the age of 14, almost 11 years ago now how time flights.

I wasn’t born with epilspsy and had never had a seizure before but I had a accident and I lost all...

Dorset

EPILEPSY...a new beginning!!!

Monday 23rd February 2013 around 10.30am.....
‘Could you send an email too....’ a colleague asked. I looked at my computer screen, then keyboard and...

Belfast

Hey guys, my name is chloe-jade and I am 19 years old.

I was diagnosed with epilepsy when I was 10. I started having seizures more often than usual. I have had a lot of hospital...

Suffolk

Riding the Waves of Epilepsy

The storm has passed. My only hope is that it never shows its ugly face again.

On the 24th of June 2020 I have experienced one full year with no...

East Kilbride

I lost my beautiful daughter Isabella aged just 16 in June 2018 to SUDEP (Sudden Unexpected Death in Epilepsy).

It all started when Bella was around 7 years old. She kept falling over, then...

I was 14. I’d gotten home from school one evening and we had just ordered food.

The new Willy wonka was playing on the TV and I was sitting down ready to eat my chips and mushy peas (my go...

Liverpool

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...

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