Today, June 23rd, marks International Dravet Syndrome Awareness Day. On this day, DSF along with families, supporters, and organizations worldwide, call attention to this rare and catastrophic form of epilepsy that affects 1:15,700.
Beginning in infancy, Dravet syndrome is a lifelong condition characterized by frequent and different seizure types, including prolonged seizures which often require emergency intervention. But, Dravet syndrome is more than just seizures. Patients may also develop motor and speech impairment, behavioral disorders, cognitive impairment, gait disorders, eating disorders, sleep disorders, and autism or autistic-like features. In addition, Dravet syndrome has a high incidence rate of Sudden Unexpected Death in Epilepsy (SUDEP). Living with seizures and these comorbidities severely impacts patients every moment of every day, including the overall quality of life for patients and their families.
By raising awareness of Dravet syndrome, our community can increase knowledge in the general public; improve early diagnosis; assure that patient families have the information they need to manage their loved one’s care; and reduce the feelings of isolation faced by patients and their families.
Our new 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. Today as we honor patients and their families, you can help us raise awareness by:
- Following our social media channels and sharing our posts
- Telling your loved one’s story, including the difficult reality as well as the milestones your child has made
- Print and share brochures about Dravet syndrome, which can be found on our Caregiver Resources page.
- Watching and sharing The Balancing Act Presents Behind the Mystery of Dravet Syndrome. Produced in June 2022, the segment is presented by TV host, motivational speaker, and multiple sclerosis patient Montel Williams, along with The Balancing Act host Olga Villaverde and tells the story of a Kaylee, who has Dravet syndrome, and her family.