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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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...

I was first diagnosed when I was 14 years old. It was a typical family Christmas and we were celebrating. All I can remember is the dog barking and sniffing around me, and then I was having a...

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...

I got epilepsy at age of 6 but I didn't get the the treatment I desperately needed until I was 16.

I grew up thinking I was lazy, stupid etc. I then moved in with my aunt who tried her best...

Swansea

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...

“I have idiopathic generalized seizures, but they are brilliantly controlled now. If a seizure occurs, it’s due to excess alcohol, anxiety or stress. I am also very lucky that my seizures happen...

Back in 2012 i fell to the floor shaking at my home in Wolverhampton it was a lovely day as i had my son aged 3 and my daughter aged 2 with me at the time and my friend popped round which in a way...

england

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

Ariish Wol @arrriish / https://www.instagram.com/arrriish/ has been modelling for just over 2 years. She was born in South Sudan and grew up in...

My first seizure came completely out of the blue in February 2019. Since then, I’ve gone on to have over 170 more. But EEG tests showed no seizure activity linking to epilepsy. A letter initially...

It all began when I was 16, I fell in the washroom and bit my tongue.

This fall was dismissed as iron deficiency at first but when the frequency increased and eeg, CT, MRI were done,...

India

I had my first tonic clonic seizure when I was 21. At first my family and I had no idea what was happening to me. Four weeks later I was diagnosed with myoclonic epilepsy. I really struggled a lot...

As part of National Epilepsy Week, I wanted to open up about my journey with Epilepsy. It all started a few years back when I woke up and suffered from these 'jerk' like moments, which in August...

Surrey

I never knew the ‘bad feelings’ or the ‘daydreams’ I had from a child was epilepsy until I was diagnosed in 2020. I was diagnosed with Frontal Lobe Epilepsy. I was under investigation from late...

Leeds

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 got diagnosed with epilepsy when I was eight after having two clonic tonic seizures. When I first got diagnosed I didn’t understand what epilepsy was all I knew is that it was bad. I was started...

Northamptonshire, England

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...

Hi, my name is Angela, I am now 22 years old and this is my story....

I first started having seizures as a baby for two years. I had really bad febrile convulsions. I did all the exams but...

Manchester

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

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