My 10-year-old daughter, Avery, has a rare, catastrophic, and lifelong form of epilepsy called Dravet syndrome. Recently, I have expressed the difficult emotions and experiences that accompany this reality. These hard things are all true, but there is another truth, too: She makes me smile every single day. Some…
Discussion
Treatment with the experimental therapy zorevunersen may alter the progression of Dravet syndrome, according to new long-term data from early clinical trials. The data indicate that zorevunersen led to long-term reductions in seizure rates, improved communication abilities, and overall quality of life, and that the experimental treatment was generally…
Discussion
When we’re at home, Avery is just Avery. But when we enter the world, go to school, or attend organized activities where age-appropriate social interactions and behaviors are the norm, Avery becomes someone who exists outside the norm. Avery is my 10-year-old daughter who has Dravet syndrome. Because of…
Discussion
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…
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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