What is Dravet Syndrome?

Dravet Syndrome affects around one in every 15,000 people. In most cases, Dravet Syndrome is caused by a mutation in a gene known as SCN1a. 

This gene contains instructions (genetic code) for the creation of a protein (ion sodium channel) that helps control electrical messages in the brain. A change or mutation in the genetic code may lead to the faulty functioning of this channel, causing the person with the SCN1a gene mutation to experience seizures and a variety of other symptoms. 

Quotation

Every child or adult with Dravet Syndrome is different, with some affected more severely than others or with different emphasis of symptoms. But for all, the condition is complex, symptoms can be interrelated and seizures can be highly unpredictable.

Dravet Syndrome is typically characterised by multiple, frequent, treatment resistant and often prolonged (febrile) seizures and sometimes rare type of seizures.

In most cases, the first seizures occur with fever and are generalised tonic-clonic (involving the whole body) or one-sided convulsions (involving half the body). You can find out more about the different types of seizures here.

Epilepsy is just one part of Dravet Syndrome. After the first year of life, the child’s development typically slows down or regresses, sometimes severely. Alongside continuing seizures, a wide range of secondary conditions (‘comorbidities’) and issues may arise. You can find out more about comorbidities here

Click on the images below to find out more about Dravet Syndrome or download our Understanding Dravet Syndrome leaflet.

Dravet Stories

Real-life insights into living with Dravet Syndrome, shared by our amazing community of Dravet families,

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