June is Dravet Syndrome Awareness Month, and the community is coming together to share stories, build support, and increase knowledge about this rare form of childhood epilepsy. The Dravet Syndrome Foundation (DSF) is heading up several initiatives over the course of the month, with this year’s theme being…
News
Up to 1 in 4 people with hard-to-treat epilepsy, including those with Dravet syndrome, were found to stop taking Epidiolex (cannabidiol) shortly after starting treatment, primarily due to side effects or a lack of efficacy, according to a real-world study. “Epidiolex is generally well-tolerated and the majority continued…
Most caregivers of people with Dravet syndrome report poor sleep quality, according to a study in Germany. Reduced sleep quality was linked to higher levels of anxiety, depression, and burden, and more health conditions in patients, including moderate sleep disturbances. The impact on sleep for caregivers was substantial even…
Adding Fintepla (fenfluramine) to anti-seizure treatment is associated with a more than five times higher chance of having a 50% decline in the frequency of Dravet syndrome-related seizures, a review of clinical trial data shows, Decreased appetite, diarrhea, fatigue, and weight loss were among the noncardiovascular side effects…
Treatment with Epidiolex led to a range of improvements — from fewer seizures to improved cognition and better social skills — for both children and adults with Dravet syndrome and Lennox-Gastaut syndrome (LGS), according to new analyses of a U.S. caregiver survey. The results, presented in a pair…
Long-term treatment with soticlestat was found to reduce seizure frequency by more than 50% in most Dravet syndrome patients, according to about two years of data from the ongoing ENDYMION 1 clinical trial. “Soticlestat was associated with sustained seizure reductions over the interim period presented here,” researchers wrote.
Note: This article was updated April 21, 2023, to reflect that Fintepla was originally classified a Schedule IV controlled substance due to its low risk of abuse or misuse. A risk evaluation and mitigation strategy established by Zogenix that limits Fintepla’s access due to links with cardiovascular-related side effects remains…
Adopting a ketogenic diet — one low in carbohydrates and high in fat — safely and effectively reduces the frequency of seizures and improves cognitive function and behavior in children and adolescents with Dravet syndrome, according to a multicenter study in China. Nearly a third of patients were…
More severe epilepsy and greater behavioral challenges predict worse health-related quality of life (HRQoL) up to 10 years later in people with Dravet syndrome, a study has found. In addition, early use of sodium channel blockers — a type of anti-seizure medication that should be avoided in most…
Children and adults with Dravet syndrome commonly exhibit challenging behaviors such as aggression, dangerous behavior, and impulsivity, according to a Dutch study based on responses from 20 parents. These behaviors, apart from the seizures that are a hallmark of the disease, can greatly affect the quality of life of…
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