Real stories

Some of our supporters have been kind enough to share their experiences of living with epilepsy. You can read their stories here. You can also read testimonials from some of our Grantholders about the impact of their Epilepsy Research UK-funded research – just click here.

Tom 'Moose' Moulton Tom ‘Moose’ Moulton
Tom ‘Moose’ Moulton died unexpectedly this summer age 29, having lived with epilepsy since he was 10. His mother, Lee Moulton, and friend and colleague, Mike Bromfield, talk about Tom’s life and the enormous positive impact he had on all those who knew him.
Read Tom’s story here
Anna Hollingworth Anna Hollingworth
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.
Read Anna’s story here
Tom Jensen Tom Jensen
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.
Read Tom’s story here
Mary Smythe
In 2011 Mary suffered a hip fracture and had to have surgery. However whilst she was in hospital her epilepsy medication was mismanaged.
Read Mary’s story here
James and Alice Byron with baby Arthur_t Alice and James Byron
Alice and James’ son, Arthur, was born with an underdevloped 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.
Read Alice’s story here
Emma Friedmann with her son, Andy. Image courtesy of Leicester Mercury Emma Friedmann
Emma was diagnosed with epilepsy at about 10 years of age, and after trialing one drug she was switched to sodium valproate (aged 15). Emma wasn’t informed of the significant risks of sodium valproate in pregnancy, and as a consequence she had a son who was severely affected.
Read Emma’s story here
Dave Hellings Dave Hellings
Dave was diagnosed with epilepsy at the age of 18. Although his seizures are controlled he still has side effects, including mood swings, anxiety attacks, auras and problems with memory. Here he talks about his experiences.
Read Dave’s story here
The Greenaway family The Greenaways
John Greenaway was diagnosed with epilepsy in 2007, and his daughter, Claire-Louise, was diagnosed soon after in 2009. Jessica, John’s other daughter has not yet had a formal diagnosis but she has experienced similar symptoms to her sister.
Read the Greenaways’ story here
David Scourse David Scourse
David Scourse died of SUDEP when he was just 23 – approximately six years after he was diagnosed with epilepsy. His parents, Richard and Heather, tell his story.
Read David’s story here
Paul Stevens
Paul, 51, was diagnosed with epilepsy in 2014. Although he experiences brief auras only, his condition has had a significant impact on his life.
Read Paul’s story here
Sue Weedon Sue Weedon
Sue’s mother has had epilepsy since childhood, but it wasn’t diagnosed until she was in her fifties. Here Sue talks about her mother’s experiences and the impact her epilepsy had on family life.
Read Sue’s story here
Blackheath. Ref: John and Nancy Bettelley
John and Nancy have fundraised tirelessly for their son Andrew’s memorial fund, to support our research and raise awareness as a positive legacy to Andrew.
Read John and Nancy’s story here
Olivia Killeen Siobhan Killeen
Siobhan has recently done a skydive for Epilepsy Research UK, in honour of her daughter Olivia who has West syndrome.
Read Siobhan’s story here
 Nick Christian's daughter, Rachel Nick Christian – a father’s perspective
Nick’s daughter, Rachel, developed epilepsy at the age of three. Thanks to ground-breaking surgery she is now seizure-free and lives life to the full.
Read Nick’s story here
 Margaret Hay Margaret Hay
Margaret, a former nurse, developed epilepsy when she was in her fifties. Her memory has been severely affected by recurrent seizures
Read Margaret’s story here
 Mark Blackshaw Mark Blackshaw
Mark, 42, works as a Quality Manager. He had his first seizure when he was 17, whilst playing Badminton.
Read Mark’s story here
 Amy Spencer Amy Spencer
Amy has had epilepsy since the age of 14, and her seizures are controlled on sodium valproate. Having recently married, she and her husband are thinking about starting a family.
Read Amy’s story here
 Stuart_Rogers_61_website_t  Stuart Rogers
Stuart, 61, was diagnosed with migraine-induced epilepsy at the age of 56.
Read Stuart’s story here
 Sam Porter Sam Porter
Sam, 25, developed epilepsy during puberty and underwent successful epilepsy surgery at 19.
Read Sam’s story here
 Andrew Morgan Andrew Morgan
Andrew began to have seizures following surgical treatment for an angioma.
Read Andrew’s story here
 Joan Upfield Joan Upfield
Joan was diagnosed with epilepsy at the age of 11. She believes her memory was severely affected by her first anti-epileptic drug.
Read Joan’s story here
Young business woman working on her laptop. Ref: Charlotte’s story
Charlotte’s epilepsy was diagnosed when she was 12, having been misdiagnosed two years earlier as migraines. Now 26, she still experiences regular absence seizures despite taking medication, but leads a full life.
Read her story here