Your Stories

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Your Stories2020-07-13T09:01:27+01:00

It is the very personal accounts from our supporters that drive our collective sense of purpose.

Thank you for sharing them, thank you for supporting us and thank you for being part of this powerful community working together to achieve a life free from epilepsy.


Nelle is a musician living in southeast London, originally from Liverpool. She has experienced the effects of epilepsy for as long as she can remember and was diagnosed with temporal lobe epilepsy aged 16.


Claire is a long-term ERUK supporter who lives with epilepsy. She is the owner of a vegan and cruelty-free boutique call The Healing Hut, and kindly makes regular donations to our work from sales through her business.


I enjoy photographing the detail of the world around me in a style I call ‘Ministract’ because sometimes the pictures are minimal, sometimes they’re abstract, and sometimes they’re somewhere in between.


Thanks to a breakthrough in research, brain surgeons advised they were confident a piece of tissue could be removed from Rachel’s brain and her seizures would likely stop. The news was met with a mixed reaction of hope, excitement, but also fear from the family.


My aunt was a remarkable woman who endured many challenges in her life with unwavering strength, love and humour. Jean left ERUK a significant gift in her Will in 2019.


Carolyn has lived with epilepsy since her teenage years. She is a retired biochemist who specialised in immunochemistry and trace element analysis.


Fanette and Paul remember their beloved daughter Céline, who sadly passed away after suffering an acute nocturnal seizure: “Céline took a lot, but she gave back so much more."

Sam C

"Samantha was my first baby, born when I was only 16. She was the oldest of 3 children; Scott was born when she was aged 2 and Kerry came along 8 years later when Samantha was 10.


Oliver underwent surgery in the summer of 2018 to help control his seizures. His father Steve has kindly shared their story: "Oliver’s condition was first noticed when he was at nursery, where they thought that his behaviour was attention seeking."


Hamsia, 29, was diagnosed with epilepsy at the age of 17. For years she couldn’t accept her condition, but now she’s ready to share her experiences to help others.


Anna is a qualified sports coach and teaches PE to primary school children. At the age of 24, she suffered a head injury when her car was hit by a careless driver, and she developed epilepsy as a result.


Tom is a neuroscientist at University College London. He had his first recognisable seizure when he was nine, but it was a number of years before he got an official diagnosis of epilepsy.

Tom ‘Moose’

Tom ‘Moose’ died unexpectedly this summer age 29, having lived with epilepsy since he was 10. His mother, Lee, and friend and colleague, Mike, talk about Tom’s life and the enormous positive impact he had on all those who knew him.

Alice and James

Alice and James’ son, Arthur, was born with an underdeveloped brain, and epilepsy that couldn’t be controlled. Here Alice talks about Arthur’s bravery in life, and their drive to fundraise for research in his memory.


EMMA I was about 10 when I was diagnosed with epilepsy after having had two seizures Emma was diagnosed with epilepsy at about 10 years of age, and after trialing one drug she [...]


DAVE I wasn’t diagnosed with epilepsy until I was 18, which is when I had my first seizure Dave was diagnosed with epilepsy at the age of 18. Although his seizures are controll [...]


DAVID David's first seizure happened several months after a head injury sustained from a collision with a tree when out running one morning David died of SUDEP when he was just [...]


PAUL Driving Again To anyone else in a similar situation I would say don’t give up, and don’t be afraid to ask your consultant for assistance Paul, 51, was diagnosed with epile [...]


SUE Living with Epilepsy You’ll be alright, you’ll feel better soon - is what my mum was told Sue’s mother has had epilepsy since childhood, but it wasn’t diagnosed until she w [...]


SIOBHAN Diagnosed With West Syndrome It was frightening but thrilling to achieve something I didn’t think I’d have the nerve to do Siobhan has recently done a skydive for Epile [...]


MARGARET Interior Designer Margaret was diagnosed with epilepsy in 2006 at the age of 56 Margaret, a former nurse, developed epilepsy when she was in her fifties. Her memory ha [...]


MARK Quality Manager, Keen Sportsman & SCUBA Instructor Research into epilepsy is the only way that things will get better for those who live with it Mark, 42, works as a Q [...]


AMY Statistics Consultant I hope that research will one day lead to a more personalised approach to treatment as epilepsy is different for everyone. Amy has had epilepsy since [...]


STUART Living with Epilepsy I believe research is the way to improve the lives of those with epilepsy Stuart, 61, was diagnosed with migraine-induced epilepsy at the age of 56. [...]

Sam P

SAM P Raising awareness of epilepsy is important as it does not get the profile that it should.  And research is vital to finding out what causes epilepsy and how to treat it. [...]


ANDREW Retired Secondary School Teacher During the decades that followed Pam and I had a family of three beautiful girls who have all gone onto have families of their own Andre [...]


JOAN Successful Kitchen Designer “I felt it coming on. I knew I was going to have one and would try to fight it  …. but you can’t Joan, a successful kitchen designer, comes fro [...]

Through the incredible efforts of our supporters over the last twelve months, we are delighted that Epilepsy Research UK was able to make £1.3 million available for our 2020 grant awards.

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We’ve said it before, and we’ll say it again – our research would not be possible without the generosity and commitment of our supporters. Here are some of their incredible stories.

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Do something amazing today and make a donation to ERUK. Your money will go towards driving and enabling life changing, life saving research projects which help people with epilepsy.

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