A History of Dravet Syndrome

Although sometimes described as a severe form of epilepsy, epilepsy is just one part of Dravet Syndrome. 

A ‘syndrome’ is a group of signs and symptoms that, when considered together, suggest a particular medical condition. As such, Dravet Syndrome is relatively newly-discovered. Researchers have made great progress in improving understanding of the condition since it was first described in 1978 by Charlotte Dravet, a paediatric epilepsy specialist working in Marseille.

Names that were initially used for the condition include Severe Myoclonic Epilepsy of Infancy (SMEI) and Severe Polymorphous Epilepsy of Infancy. However, doctors came to realise that the types of seizures involved were much more varied and symptoms much more wide-ranging than suggested by these descriptions. In 1989, it was renamed Dravet Syndrome after the specialist who had done so much to improve understanding of the condition. 

The genetic causes of Dravet Syndrome were discovered in 2001, and since then numerous studies have contributed to a better knowledge of the condition. Since the founding of DSUK in 2008, we have seen significant progress made, with research ongoing into all aspects of Dravet Syndrome. While there is still much to be done, we’re optimistic that, by working together as a Dravet community, we will continue to see improvements in its diagnosis and management, achieve better outcomes for those living with the condition and, hopefully, one day find a cure.