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.
Sienna’s Dravet journey started early - she had her first seizure in October 2011 at just over three months old. Her genetic test results were unusual, even by Dravet standards.
Matthew was born in 1994 and is a young adult living with Dravet Syndrome.
Mia was born in 2014 and diagnosed with Dravet Syndrome just before her first birthday.
Toby had his first seizure at 8 weeks old and was diagnosed with Dravet Syndrome aged 7 months. Watch his video story.
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.
Iwan was born in 2007. He was diagnosed with Dravet syndrome at the age of four.
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.
