What is Dravet Syndrome?

Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of epilepsy for which there is currently no cure. Seizures begin in the first year of life in an otherwise typically developing infant. Initial seizures are most often prolonged events and, in the second year of life, other seizure types emerge. All seizure types are remarkably resistant to medical therapy and the prognosis for Dravet syndrome is poor.

Individuals with Dravet syndrome face a higher incidence of SUDEP (sudden unexplained death in epilepsy) and have associated conditions, which also need to be properly managed. These conditions may include:

• behavior and developmental delays
• movement and balance issues
• growth and nutrition issues
• sleeping difficulties
• chronic upper respiratory infections
• sensory integration disorders
• disruptions of the autonomic nervous system (which regulates things such as body temperature and sweating)

Children with Dravet syndrome do not outgrow this condition and it affects every aspect of their daily lives.

Unless a cure or better treatments for Dravet syndrome is found, individuals with this disorder face a diminished quality of life. Current treatment options are extremely limited. The constant care and supervision of an individual with such highly specialized needs is emotionally and financially draining on the family members who care for these individuals.

We invite you to watch the video "Ciara's Light" by Paulo Caserta Films. This 10-minute documentary about the O'Driscoll family and their daughter's journey with Dravet syndrome gives you a perspective of what it is like to live with this disease.

Watch Dr. Laux's Tribute Video!

To better understand Dravet syndrome, go to:

NINDS Dravet Syndrome Information Page

ILAE: Dravet Syndrome by Dr. Charlotte Dravet