Some of our supporters have been kind enough to share their experiences of living with epilepsy. You can read their stories below. You can also read testimonials from some of our grant holders about the impact of their Epilepsy Research UK-funded research – just click here.
Céline Stephanie Newman
Paul & Fanette Newman 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. With her smile, her humour and her bouncy and positive personality through all her ups and downs, she was always popular with both our friends and hers.”
Read Celine’s story here
Oliver underwent surgery in the summer of last year to help control his seizures
Read Oliver’s story here
Christine Carter lost her daughter to epilepsy. As she says “Someone once said to me that life carries on but that you watch it go by through plate glass”
Read Sam’s story here
James developed epilepsy at the age of 16 and has now written a book to help others.
Read James’ story here
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.
Read Hamsia’s story here
Adele-Marie, along with family and friends is raising money in memory of her mum, Ann Marie, who sadly passed away in November 2016.
Read Adele’s story here
Nelle a musician, believes that her epilepsy has contributed to her creativity. She explains how difficult it was for her to get an epilepsy diagnosis not least because she found it difficult to describe her abstract experiences when having a seizure.
Read Nelle’s story here
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
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 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
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
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
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 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 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
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, 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’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
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
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 – 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, 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, 42, works as a Quality Manager. He had his first seizure when he was 17, whilst playing Badminton.
Read Mark’s story here
Amy has had epilepsy since the age of 14, and her seizures are controlled on sodium valproate. With careful management she has managed her condition through both her pregnancies.
Read Amy’s story here
Stuart, 61, was diagnosed with migraine-induced epilepsy at the age of 56.
Read Stuart’s story here
Sam, 25, developed epilepsy during puberty and underwent successful epilepsy surgery at 19.
Read Sam’s story here
Andrew began to have seizures following surgical treatment for an angioma.
Read Andrew’s story here
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
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