June 23rd is International Dravet Syndrome Awareness Day. On this occasion, DSF, alongside families, supporters, and organizations globally, sheds light on this rare and severe form of epilepsy affecting 1 in 15,700 individuals.
Beginning in infancy, Dravet syndrome is a lifelong disorder characterized by recurrent and diverse seizure types, including prolonged seizures necessitating immediate medical intervention. Yet, beyond seizures, Dravet syndrome encompasses a spectrum of challenges, including motor and speech impairments, behavioral disorders, cognitive limitations, gait irregularities, eating and sleep disturbances, and autistic-like behaviors. In addition, Dravet syndrome carries a heightened risk of Sudden Unexpected Death in Epilepsy (SUDEP). Coping with seizures and these associated conditions significantly impacts patients and their families on a daily basis, profoundly affecting their quality of life.
By raising awareness of Dravet syndrome, our collective effort aims to enhance public understanding, increase early diagnosis, equip caregivers with resources and tools to manage this disease, and alleviate the sense of isolation experienced by patient families. Our tagline – Community. Research. Progress. – recognizes the remarkable work being done by patient families, clinicians, researchers, and industry partners to improve life for those living with Dravet syndrome.
