Stories about Dravet Syndrome
Maxine has Dravet syndrome, a rare and severe form of epilepsy. Her mum Patricia tells Epilepsy Today about life with the condition, from diagnosis and treatments, to finding independence
According to online reports, an increasing number of US families with children who have Dravet Syndrome, are moving to Colorado. They are doing this to benefit from the state’s more relaxed laws on the medicinal use of cannabis (marijuana).
Dravet Syndrome is a rare form of extreme epilepsy in children, with frequent seizures that are hard to control.
A non-profit making organisation, called Realm of Caring, has developed a strain of the cannabis plant. They claim it can provide relief from seizures where AEDs have not worked.
Epilepsy Action and Dravet syndrome UK have awarded a research grant to researchers at the UK’s Institute of Neurology. The grant is to fund research into Dravet syndrome, a rare form of childhood epilepsy. The money was given by TeamMAX, a fund set up in memory of Max Miller, who had Dravet syndrome, and died as a result of SUDEP (Sudden Unexpected Death in Epilepsy) in June 2011.