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.
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.
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.
Ruby was born in 2001. She was diagnosed with Dravet Syndrome aged just nine months.
