Children with Dravet syndrome may experience multiple seizures before receiving a diagnosis and starting disease-specific treatment, with substantial delays reported between seizure onset, genetic testing, diagnosis, and treatment, a European survey study shows. Among 45 patients whose diagnostic journeys were reviewed, seizures began at a median age of 4…
Discussion
School started this week for my 10-year-old daughter, Avery. In many ways, Avery is like most kids — she is social, values friendship, and wants to be accepted by her peers. But in other ways, she is very much unlike her peers. Avery has Dravet syndrome, a rare, severe,…
Discussion
Newer add-on anti-seizure medications may help reduce the burden of life-threatening status epilepticus in people with Dravet syndrome, a real-world study suggests. Fintepla (fenfluramine) was associated with a lower rate of status epilepticus, while Diacomit (stiripentol) was associated with shorter episodes. Each additional newer anti-seizure medication…
Discussion
Earlier today, I sat on the empty bleachers at our elementary school, where my daughter was participating in a youth cheerleading camp. The rest of the parents had left, but I remained because Avery has Dravet syndrome, which means she is prone to having seizures, and I wanted…
Becoming educated and informed about Dravet syndrome is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnist’s words of wisdom to help you along on your Dravet syndrome journey.
There is no cure for Dravet syndrome yet, but here you can find more information about current therapeutic approaches, as well as experimental treatments that are in the pipeline.
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