Living with Dravet Syndrome

Adapting to live with Dravet Syndrome, and all the complexities that the condition brings, can be very challenging. 

Dravet Syndrome is difficult for the child or adult living with the condition. It also has a big impact on the entire extended family - with many emotional and practical consequences for parents, siblings, relatives and loved ones.

At DSUK, we’re here to help guide you through these challenges, provide support and reassure you that you and your family are not alone. Our Dravet Community is here to support you every step of the way. The following two videos were made to give an insight into the everyday lives of some of our Dravet families.

Paige's Story

Paige's Story
Play

Living with Dravet Syndrome - introductory video

Living with Dravet Syndrome
Play
Quotation

Families often say the best thing about being around people who live with what you live with, is that when you say something about your life with a Dravet child, they don’t question or quiz you, they just nod in agreement and that makes things feel just a bit better.