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…
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,…
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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