What is Dravet Syndrome

Dravet Syndrome is an extremely rare condition affecting children who experience many different types of seizures. Children with Dravet can have hundreds of seizures a day and don’t respond well to treatment.

Dravet Syndrome is one of the most catastrophic paediatric epilepsy syndromes.

It is very rare, representing about 7% of all severe epilepsies starting before the age of 3 yrs. It is highly resistant to treatment and its prognosis is poor.

Children are often left cognitively and developmentally impaired – often severely.

Only 1-5 % of cases have been diagnosed but there are at least 306,000 individuals in the world that have Dravet syndrome.

Symptoms generally begin in the first year of life around five months of age with boys twice as affected as girls.

When it starts sufferers usually have one-sided or grand mal (tonic-clonic) seizures, which are difficult to stop and last longer than 10 minutes.

Child sufferers are at risk of serious seizures (status), due to illness, tiredness or over-excitement, which usually requires hospitalisation.

There is currently no cure. Response to medication is variable and often seizures persist despite treatment.

For more information go to http://www.dravet.org.uk/

DRAVET Syndrome UK is a non profit, charitable organization here in the UK. It is a partnership of parents and professionals dedicated to providing support and improving the quality of life for affected individuals and families and to funding research to find a cure for Dravet syndrome.