Your Stories

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.

Loretta and Paolo

Paolo lives with MELAS (Mitochondrial Encephalopathy, Lactic Acidosis and Stroke-like episodes) syndrome – a rare disorder mostly affecting the nervous system and muscles, and sometimes causing epilepsy. In this piece, Paolo’s mother Loretta discusses the challenges involved with living with MELAS syndrome, the additional impact of epilepsy, and the importance of further research into both conditions.

Donna and Ian

Donna's brother Ian was a long-standing supporter of Epilepsy Research UK, taking part in countless fundraising events and raising a huge amount for research. Tragically, Ian died in January of 2022 after suffering a seizure. In this piece, Donna talks about Ian's life and why she feels the risks associated with SUDEP must be discussed with more people affected by epilepsy.


Jared tragically lost his life to SUDEP in August 2021. In this piece, Jared's mum Jane discusses his rich and colourful life, his journey with epilepsy, and the fundraising his family and friends are doing to support research in Jared's memory.


Dan is a student nurse and ex-Royal Navy medic. He was diagnosed with epilepsy three years ago at the age of 21 after experiencing two tonic-clonic seizures. In this piece, Dan shares the tough reality of having to leave his dream job due to his condition and starting on the path to a new career.


Iain is a former World and UK Fly Fishing Champion and a longstanding supporter of Epilepsy Research UK. His son Eliot was diagnosed with epilepsy in November 2017 after experiencing a series of seizures. In this interview, Iain discusses the impact of his son’s condition and his ongoing support of research.

Leah and Jack

Inspired by her son Jack who lives with epilepsy, Leah and friends Anita, Laura and Toni recently took on the 25K Broads Walk Challenge in aid of Epilepsy Research UK. We caught up with Leah to discuss the disruptive impact of the conditioning on family life and why she is committed to supporting vital research into epilepsy.


Yvonne experienced absence seizures as a young child, but went on to live seizure-free from the age of nine until last year. While at home with her family during lockdown, she experienced a series of frightening seizures which left her hospitalised.


Matt is a physiotherapist working with elite professional rugby teams, cyclists, triathletes, runners, and he also supported athletes in the London 2012 Olympic games. He had his first seizure in August 2020, aged 38.

Gill and Gordon

Gill and Gordon have never publicly shared their story but decided it was time to do so for many reasons. They want to continue raising money for research into epilepsy and encourage others to join the fight. They want to inspire researchers to do their very best to find new treatments.

Amanda, John and Archer

Amanda and her partner John are taking on this week’s #Brainathlon. The family recently spoke to BBC Breakfast News about using Professor Sameer Zuberi’s vCreate Neuro platform, which was partly supported by Epilepsy Research UK, to upload videos of their son Archer’s suspected seizures.

Cecilia and Olivia

Olivia is five years old and lives with Lennox-Gastaut syndrome – a severe and rare form of epilepsy characterised by cognitive disorders and multiple seizure types. In this interview, Olivia’s mother Cecilia discusses her diagnosis, treatment journey and the various impacts of epilepsy on their family life.

Tanya and Johdi

Johdi was a much-loved daughter, sister and friend who sadly lost her life to SUDEP, aged just 17. We spoke with Tanya, Johdi’s mother who shared her story and spoke about the hope that, through research, fewer families will have to endure the pain of losing a loved one to epilepsy in the future.


Francesca is an Epilepsy Research UK supporter and host of the ‘Seize Your Adventure’ podcast, which explores the whole spectrum of adventure through stories from people living with epilepsy.


Craig is a Master Technician for a car company and lives in Norfolk. In this interview, he discusses his epilepsy journey, from diagnosis at a young age to the challenges he’s had to overcome and his hopes for the future.


Hannah is a student at a circus school in Bristol University, where she performs aerial acrobatics including the trapeze, silks, and hoops. Here she discusses living with epilepsy, the athletics of circus performance, and the importance of finding the right support group.


Caroline is an epilepsy support group leader and surfer living in Plymouth. In this interview, she discusses living with epilepsy, her love for the outdoors, and the ways in which she is helping others in the south-west living with the condition.


Annie Brooks Blogger & Epilepsy Advocate Annie has an award-winning travel and fitness blog, and openly speaks about her own personal experiences with [...]


Mark is one of the UK’s only firefighters living with epilepsy. We caught up with him for a wide-ranging conversation covering his love for the outdoors, coming to terms with the diagnosis as a teenager, and breaking down barriers for others.


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.


To mark the start of the 'Tour de ERUK', we spoke to former World Champion cyclist and Tour De France stage winner Marion Clignet. With over 300 victories, including stage wins in Tour de France, Marion shared her journey to becoming the French World Cycling Champion, despite being diagnosed with epilepsy at 22.


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.


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, 33, 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 over £1.3 million available for our 2021 grant awards.

Read More Here

We’ve said it before and we’ll say it again – none of the research we fund would be possible without the generosity and commitment of our supporters. Here are some of their incredible stories.

Read More Here

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

Read More Here

Shopping Basket