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

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 was diagnosed with epilepsy aged 23. I lost my license for 5 years as unfortunately I kept having seizures around 10-11 months after the previous one. I live in Cambridgeshire in a small village...

Radio personality

“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...

“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...

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

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

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...

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...

My amazing epilepsy specialist nurse is Helen Hodgson, at Southmead Hospital in Bristol, England.

For only 20 minutes every week, a patient of Helen Hodgson's would reveal the most...

Bristol

I've had epilepsy since I was eight years old. I have complex partial seizures and absences.

I've never been allowed to drive and have lost a lot of jobs. My memory affected my education...

Northampton

Gemma was diagnosed with epilepsy in her twenties after many years of seizures. She is prone to falling and this, together with the fear and reality of generalised seizures, has a huge impact on...

Chelmsford

Life is what happens when you are busy making plans.. (or cancelling plans it seems at the moment)
Christmas and New Year is often a time most come to reflect and that doesn't exclude me....

I was diagnosed with temporal lobe epilepsy when I was seven years old. My parents never made an issue out of it and I was always allowed to do things that I was safe to do. Until the age of 21, I...

So here's my story of my epilepsy.

Through childhood I had a few partial seizures that my parents were told I had epileptic tendencies but they didn't know if they would develop or not....

Newport

I was diagnosed with epilepsy from the age of 7 until I reached 35 of age my condition has become worse I would have absent seizures and falls in public and at home and This effected my work and...

London

Fraizer is 7 and was diagnosed with epilepsy in September this year. He has focal onset epilepsy with focal to bilateral tonic clonic seizures. “He had his first seizure in May and it absolutely...

Ena Bingham is a retired epilepsy specialist nurse. She was the first Sapphire Nurse in Northern Ireland. Stacie Sheeran was diagnosed with epilepsy in 2007. Together they volunteer at the Belfast...

Belfast

I had my first seizure when I was around 8, I remember my mum telling me years later that they told my parents that I would grow out of it, as it was just a behaviour and attention seeking...

Since around November, it feels like I’ve been suffering from a non stop endless seizures with just the odd two or three day break but it’s killing me. I have seizures that aren’t physical so it’s...

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