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Your Stories

Meet some of the amazing people that are part of our epilepsy community. Here are their stories.

Life with epilepsy: Lisa’s story

Lisa was diagnosed with a form of epilepsy called transient epileptic amnesia (TEA). This National Epilepsy Week, Lisa is sharing her story of living with ...

Life with epilepsy: Sam’s story – a FIRES Superhero

Rachel lost her son Sam to FIRES, or Febrile Infection Related Epilepsy Syndrome, in May 2021. This National Epilepsy Week, Rachel is sharing Sam’s story ...

London Marathon 2024: Kieran’s story

Tragically, Keiran lost his sister Rebecca to epilepsy and in this piece, he talks about the impact of this loss on his family and why ...

London Marathon 2024: Georgi’s story

Georgi's partner George is joining #TeamScience for the London Marathon 2024. In this piece, Georgi shares her perspective on the reality of life with epilepsy ...

Life with epilepsy: Nic’s story

Nic lives with #epilepsy and is a member of the Institute's Shape Network #PPIE group. In this piece, Nic shares her experience of our Application ...

Life with epilepsy: Paul’s story

In this piece, Paul discussed the impact of treatment-resistant epilepsy on his life since the accident and his participation in the UK Epilepsy Priority setting ...

Life with epilepsy: Janet & Emma’s story

Janet and Emma discuss the impact of epilepsy and valproate on their families and what the Hughes report means for their campaign.

Life with epilepsy: Olivia & Cecilia’s story

Cecilia, Olivia’s mother, discusses her journey with Lennox-Gastaut syndrome and the various impacts of epilepsy on their family life.

Life with epilepsy: Alexander’s story

Alexander shares how he came to terms with his diagnosis and the impact epilepsy has had on his life – especially his work.


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 ...


Iain shares about his daughter Isabelle and her story, and why supporting research is so important to them. 


Josefina says epilepsy has had a huge impact on her sleep. Josefina discusses the link between epilepsy and sleep, and how it differs for everyone.