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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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Hi my name is Gemma and I suffer from myclonic and tonic-clonic sezuires.

I was in year 7, aged 11 when I had my first seizure, I was in a French lesson writing something on a interactive...

Hertfordshire

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

Erin was diagnosed with absence epilepsy at age 8 when her teachers noticed her friends tapping her head to ‘wake her up’ in lessons. At high school, she was regularly told off for not...

Patience was diagnosed with epilepsy five years ago, when she was 14. She has both tonic clonic and focal seizures, sometimes two or three a week.

She’s speaking up this Purple Day to let...

Harry was diagnosed with epilepsy in 2018, when he was 17. “I have focal seizures where my arm and hand locks up and is unable to move. I'm still conscious but unable to speak or anything. This...

I was in year 5, on holiday, in Egypt. My family and I slept in the same room and during the night they would hear things from my side of the room.

It was in fact me having little seizures...

Danbury

I was diagnosed with epilepsy at the age of 17, while a lot of my friends were enjoying themselves drinking and partying, I was struggling trying to get the correct medication for a few tough...

Suffolk

As a child, Anky would regularly have generalised, focal and tonic clonic seizures. Growing up in India also made life difficult, due to the stigma and lack of knowledge surrounding epilepsy....

Surrey

In 2016 I was arguably at the top of my game in terms my chosen career. I had served 26 years in the police service predominantly working within the world of tackling serious and organised crime....

Kidderminster

I was first diagnosed with epilepsy 36 years ago, at the age of 9.  This is my story. (Names of sisters have been changed)

It was the morning of February 2, 1980, and I was in 4th...

Diagnosed this week (two days before my 67th birthday) with epilepsy following two recent events at home. Huge relief to find out what’s been happening; after extensive tests and scans the...

Rylstone

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 4 years old. However when I was a baby there was several incidents where my mum and dad suspected I had epilepsy. When I was first diagnosed I could have...

Hi all, Had epilepsy from young age. Have partial seizures/ absence about twice a month.am working .i am sporty playing squash /gym 2-3 times a week. Have had a couple of worse seizures when I...

Birmingham

I was diagnosed with temporal lobe epilepsy when I was 18 years old. I live with simple partial seizures and tonic clonic seizures. My tonic clonic seizures have reduced from daily to an average...

Rotherham

My name is Amy Bassett, I am 22 years old, I live in South Wales, I study Psychology with The Open University and I have had Epilepsy for about 4 and a half years now. In July 2013 I ended up in...

Pontypridd

I'm Ojijo from Kenya. My attacks came back at the age of 18 after 9 good years of being stopped from using my first drugs "phenobabyton" - I was sent for an EEG and results showed that I had...

Kenya

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

Pet Shop Boys

I'm writing because I've had a fantastic weekend however it's made me acutely aware of the...

I was born on 25 November 2002.

Up until my 15th birthday I had no history of epilepsy. However, on 10 December 2017, I had a seizure in my sleep followed by another on 27 January 2018....

Chigwell, Essex

Jane Riley currently volunteers as a member of Epilepsy Action’s Council of Management, but her volunteering story goes back much further than that. Jane has been an Epilepsy Action Information...

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