As the COVID-19 pandemic continues, vaccination has become a major tool in combating the spread and mitigating the symptomatic infections caused by the novel coronavirus. Vaccination can be a topic of particular concern for individuals with Dravet syndrome (DS) and their families given that vaccines are a common seizure trigger in this disorder.
The Dravet Syndrome Foundation partnered with our medical advisory board and Dr. Danielle Andrade’s Adult Epilepsy Genetics Program to develop a survey that would collect information on COVID-19 vaccination and individuals with DS. The survey was distributed from May to August 2021 and received 285 responses.
Caregivers reported, to the best of their ability, on the presence of side effects following each dose of the vaccine. The survey asked about the presence of fever, increased seizure activity, occurrence of status epilepticus, allergic reaction, lethargy, headache, chills, muscle pain, nausea, and soreness at the injection site.
DSF’s scientific director, Dr. Veronica Hood, shared some of the data collected from this survey in a recent blog post. You can find the blog post here.