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.
Tom is 28 years old and living with Dravet Syndrome. As well as experiencing around 30 seizures a month, he is autistic and has a learning disability. He needs 24/7 care.
Neil, a healthy and beautiful baby, had his first seizure when he was 3 months. He was finally diagnosed with Dravet Syndrome aged 36.
Matthew was born in 1994 and is a young adult living with Dravet Syndrome.
Riley was diagnosed with Dravet Syndrome at 3 years old. Watch a video about Riley's Dravet Journey aged 11, and then read about his life now as a 16 year old.
Jessie was born in 2006 and was diagnosed with Dravet Syndrome aged 4 years old.
Harley was born in 2005 - he has Dravet Syndrome and a diagnosis of autism.
Katie was born in 1981 and received a diagnosis of Dravet Syndrome when she was 29.
Amy was born in 1995 and had her first seizure aged just 8 weeks. Read her story of growing up with Dravet Syndrome.
Arlo experienced his first tonic-clonic seizure aged 2 months; he was 3 years old when finally diagnosed with Dravet Syndrome.
