The Dravet Syndrome Foundation has called for continued research into epilepsy to combat the stigma surrounding those suffering from the condition. Patients with Dravet often experience status epilepticus, a condition with seizures lasting more than half an hour, with a risk to life and danger of consequences. It should also be remembered that the mortality rate before the age of 20 years is between 15 and 20%, half of the cases due to sudden death due to epilepsy (Sudep).
This rare genetic disorder is usually accompanied, beginning in the second year of life, by comorbidities such as cognitive delay, behavioral and speech problems, autism spectrum disorder, sleep disorders and mobility problems.
Representatives of the Dravet Syndrome Foundation emphasized that World Epilepsy Day “the goal is to convey a message that is both vindictive and hopeful, that ongoing research is funded and has the means to be completed, and that patients have access to the most advanced and effective treatments through the social security system.”
Dravet syndrome, a rare disease of genetic origin, also known as catastrophic epilepsy of childhood. It is caused by a mutation in the SCN1A gene and begins to appear in the first year of life.