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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Starting uni was a daunting experience. Moving out, studying something I’d never studied before, not knowing anyone, and having full independence – it was scary and tough to navigate. My parents...

Love me, cajole me, comfort and console me, anything is welcome to help to reassure me; I know it is meant in good faith because there’s nothing else to cure me. But when you say ‘it’s’ not that...

Ipswich

Bartuf is a family owned Yorkshire business founded in 1995 and based in Armley, Leeds. They are one of the UK’s leading designers, manufacturers and suppliers of innovative retail display...

Up until 3 years ago, I didn't know much about epilepsy. The only time I had ever encountered anything to do with epilepsy was back in Primary school, where I had a friend whose Dad had epilepsy....

New Milton

Planning

When I realised things were getting serious between me and my now husband, I went for preconception counselling. I had been on Epilim (sodium valproate) pretty...

Eva-Lilly is 9 and had two focal seizures in August last year. One affected her mouth and the other affected one side of her face. She had an MRI but there were no immediate concerns. There were...

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 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

Toni is running the Great North Run for Epilepsy Action in 2021. Her son Will is 14.

“Will started with epilepsy in 2009 when he was 2 years old. His seizures came out of the blue and...

I was diagnosed with Juvenile Myoclonic Epilepsy when I was 12. I remember feeling underwhelmed; I didn't really fully grasp how it might impact my future life. When I was transferred to adult...

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

"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...

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

“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...

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

Beth, 27, had her first seizure aged 13. She fell unconscious for 15 minutes and lost all movement down her left side.

"I couldn't talk, I couldn't walk, I couldn't move the left side of my...

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

I have never in all my life experience the feeling I have had since COVID hit,
Thinking about it my job was adjusted to fit the changing times,
These are my feelings even though I’m in...

West Midlands UK

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...

From the age 14, I'd get ready for school in the morning and have a cup of tea. My arm would jerk slightly. I thought it was normal. I just carried on with my day.

That happened for years...

Chesterfield

Stevie was diagnosed with epilepsy when he was 13. Today, aged 22, his seizures remain uncontrolled. Stevie’s family describe the highs of watching their son play rugby with Dad. And the heart-...

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