In 2020 the COVID-19 pandemic completely disrupted the lives and health of the United States and the world. The development of vaccinations against COVID-19 were prioritized, and many people came together to create and test those vaccination options in an attempt to slow the pandemic and prevent more loss of life. Three years later In March 2023, things seem like they are finally starting to return to normal, although the new normal means still living with the risks of COVID-19 infection. Vaccination remains the best tool we have for avoiding severe illness from COVID-19. However, vaccinations can also be a common seizure trigger for patients with Dravet syndrome, which has complicated the decision process for a lot of families surrounding COVID-19 vaccination. In 2021, this led DSF to partner with our medical advisory board and survey the experiences of patients in the community that had already received a COVID-19 vaccination.
To learn more about the study and expert recommendations, visit this recent guest  blog post and interview I completed in partnership with the Epilepsy Foundation and Dr. Elaine Wirrell where I discuss Dravet syndrome, the COVID-19 vaccine survey, and expert recommendations on vaccination.
The study found that COVID-19 vaccines were generally well-tolerated by patients with Dravet syndrome.
- Only a small portion of patients experienced seizures, often associated with fever, and none reported status epilepticus
Expert clinicians recommend that patients with Dravet syndrome should receive all vaccinations, including for COVID-19.
- While there is risk of breakthrough seizures following vaccination, there are also significant risks from infection and severe illness.
- Work with your healthcare providers on preventative measures for fever and breakthrough seizures.
For more information and links to resources on COVID-19 and Dravet syndrome visit this page.
