Discussion
Most children and adults living with Dravet syndrome in the U.S. who remain on Fintepla (fenfluramine) for at least six months have fewer seizures and fewer hospital and emergency visits during that time, a study finds.
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When my daughter Avery was diagnosed with Dravet syndrome at just 10 months, it felt like life was constantly hanging in the balance. She had been having lengthy seizures that required medical intervention regularly, and I could only watch helplessly as Avery fought for her life every couple…
Discussion
Discussion
Today marks two years since my daughter Austen passed away from complications of Dravet syndrome. Two years since I last heard her voice or held her hand. Two years since I broke up a fight between her and her siblings, or had to go into their room to tell…
Discussion
Use of cannabidiol — a chemical from the hemp plant used for treating epilepsy — as an add-on treatment for individuals with developmental and epileptic encephalopathies (DEEs), including Dravet syndrome, leads to meaningful reductions in seizures for about half of patients, a new study has found. “Adjunctive pharmaceutical-grade cannabidiol…
Newly diagnosed? Start your journey here.
Need to know
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.
Personal experiences
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.
Treatment
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.