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.
Thomas, aged 18, lives at home with his parents, Scott and Sarah, sister Poppy and brother Louie. He had his first seizure at 10 weeks old. Scott and Sarah share their family’s experience.
Robbie, now aged 41, had his first seizure at five months old. He lives with his Mum, Fiona and Dad, Graham in Fife. Fiona shares their story.
Jessie, now aged 20, had her first seizure at 10 months old. Mum, Rachel, shares their story from first seizures, diagnosis, through childhood and the transition to adult services.
Poppy, age 19, lives with her Mum Vicki, Dad Karl and sister Lyla. Vicki shares their story.
Hannah had her first seizure at 3 months old. Now a young adult, her Mum Kelly, shares more about the challenges they've faced and the transition from children's to adult services.
Lucy lives in Supported Independent Living. Mum, Denise, shares their journey.
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.
