Dravet Syndrome UK’s Family Survey makes an impact at the American Epilepsy Society (AES) meeting

An analysis of results from the DSUK Family Survey describe the profound impact that living with Dravet Syndrome has on individuals, caregivers and other family members, including siblings.

Erin Freeman-Jones, lead author of a paper presented today at AES, analysed responses from 165 caregivers of children and adults diagnosed with Dravet Syndrome. The resulting study highlights the huge impact of caregiving and concludes that families will benefit from improved communication with healthcare professionals, psychosocial interventions (such as family counselling) and better access to social care. 

Galia Wilson, Chair of Trustees, Dravet Syndrome UK, says: “Although there have been exciting advances in understanding of Dravet Syndrome in recent years, families continue to face huge challenges on a daily basis. Our strategy at DSUK is to create a better understanding of the realities of caring for people with Dravet Syndrome, and to empower families to access the support they need by providing an evidence base through studies such as this Family Survey. We’re thrilled to be able to share results with the international audience of neurologists and epilepsy specialists at AES”. 

Galia added: “We would like to say a huge thank you to everyone who has made this survey possible: to all the participating families who shared their experiences so honestly; to Erin Freeman-Jones, Professor Andreas Brunklaus, Professor Sameer Zuberi, and their colleagues at the University of Glasgow.”