Amy
Amy was born in 1995 and had her first seizure aged just 8 weeks. Read her story of growing up with Dravet Syndrome.
Our stories
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. Find these through clicking on the filters, try searching for specific topics e.g. "guidance and advice", or simply browse the stories by clicking on the name. 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.
Ruby
Ruby was born in 2001. She was diagnosed with Dravet Syndrome aged just nine months.
Poppy
Poppy had her first seizure when she was almost six months old but it wasn't until her fifth birthday that she was diagnosed with Dravet Syndrome.
Arlo
Arlo experienced his first tonic-clonic seizure aged 2 months; he was 3 years old when finally diagnosed with Dravet Syndrome.