A Brief History of Dravet Syndrome

Discover more about the background of this relatively newly diagnosed condition.

Dravet Syndrome was first described in 1978.

Charlotte Dravet, a paediatric epilepsy specialist working in Marseille, first described the group of signs and symptoms that make up Dravet Syndrome in 1978. Researchers have since made great progress in improving understanding of the condition.

The condition was first called 'Dravet Syndrome' in 1989.

Dravet Syndrome was originally called Severe Myoclonic Epilepsy of Infancy (SMEI) and Severe Polymorphous Epilepsy of Infancy. But doctors came to realise that the types of seizures involved were 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 cause of Dravet Syndrome was discovered in 2001.

In 2001, researchers found that changes in certain genes, including SCN1A, cause Dravet Syndrome. Since then, numerous studies have contributed to better knowledge about the condition, including the changes in genes that can lead to Dravet Syndrome.

In the last 15 years, we have seen significant progress in research into Dravet Syndrome.

Dravet Syndrome UK was founded in 2009. Since then, there’s been lots of research into all aspects of the condition. This includes research that used blood tests to decode the genetics of people living with Dravet Syndrome and that explores gene therapy. There is still much to be done, but we are optimistic about the future. By working together as a Dravet Syndrome community, we will continue to see improvements in its diagnosis and management. We will also see better outcomes for those living with the condition and, hopefully, one day find a cure.