Dravet Syndrome

What is Dravet Syndrome ?

Dravet Syndrome is a rare and severe type of epilepsy.The Condition was first described in 1978 by Charlotte Dravet, a paediatric epilepsy specialist working in Marseille, France. It usually starts in early childhood and is sometimes called catastrophic epilepsy.It is estimated that Dravet Syndrome affects one in 40,000 people. However recent data suggests the real number is closer to one in 19,000.

Recognisable features

Seizures happen often and can be prolonged. This type of epilepsy is usually resistant to medicines, and a few epilepsy medicines are needed to help with seizures. Emergency medicine may be needed for prolonged seizures. Many people with Dravet Syndrome have sleep issues, feeding problems and the vast majority have learning disabilities at some level. Later in life people may also have mobility problems. Some have speech some have no speech one may walk the other may not. Everyone experiences Dravet Syndrome differently.

Dravet Syndrome UK supports people affected by Dravet syndrome. The charity provides night time monitors, holds a conference for families and professionals every two years, and runs an online forum for families. They also put on a family weekend at Center Parcs, run a 16 plus assistance fund and help fund research into the condition.

Contact Dravet Syndrome UK for more information at Dravet Syndrome UK Telephone 07874866937. Email info@dravet.org.uk Website dravet.org.uk for more information about this condition.
Soure Epilepsy Action