Receiving a diagnosis of Dravet Syndrome can be a frightening experience. Its important to remember you are not alone - other families are going through similar experiences. We have gathered together a number of written stories and videos from our Dravet Syndrome UK community. Always remember that, even though their symptoms and experiences may be similar, every child or adult living with Dravet Syndrome is different and can present differently.
If you’re interested in sharing your own Dravet Journey, click here to find out more.
Ben received his Dravet Syndrome diagnosis as an adult, despite having had his first seizures, 3 febrile convulsions, at 5 months old. Mum, Liz, tells their story.
Elise is daughter to Stella and Phil and older sister to Jasmine. She lives as a full-time resident on a specialist school/college campus. Stella shares their story.
Joe lives with his parents, Emily and Toru, and younger brother Tad, in London. The family relocated from Singapore to the UK, following Joe’s diagnosis of Dravet Syndrome.
Tate had his first seizure at just 7 weeks old. His parents, Paul and Jade, share their story.
Charlotte is 25 years old and lives with her mum, Julie. She was diagnosed with Dravet Syndrome at 10 years old.
Penny lives with her parents, Carrie and Adam, sister Ruby and brother Teddy. She had her first seizure, which lasted for 13 minutes, at 6 months old.
Finn had his first seizure at 16 weeks old. Mum, Helen, tells their story.
Paige had her first seizure at nine months old. It lasted for 4 and a half hours. Mum, Gemma and Dad, Martin share their story.
Frankie had his first seizure at 6 weeks old, lasting over an hour. Mum, Stacey, shares their story.
