Topline results from second DSUK survey on the impact of COVID-19 provide reassurance for people affected by Dravet Syndrome

Posted 24th March 2021 in News

In February 2021, we ran a survey of our membership to gather information about the SARS-CoV-2 vaccination (coronavirus or COVID-19 vaccination), in people with Dravet Syndrome (DS).  Families of eight people with DS, who had received either the Pfizer/BioNTech or Oxford/AstraZeneca vaccine, responded.  Their ages ranged from 16 – 44 years. 

The vaccine was tolerated as well in people with Dravet syndrome as in most people in the general population. 

All of the people with DS who had received a SARS-CoV-2 vaccination reported experiencing at least one side effect, including fatigue, fever, pain at the injection site, aching or headache. In the general population, these side effects are common, and reported in up to 88% of people who received the Oxford/AstraZeneca vaccine, and up to 83% of those who received the Pfizer/BioNTech vaccine.  Fever was more common after SARS-CoV-2 vaccination in people with DS, compared to that reported in the general population. Importantly, despite fever being one of most common precipitants for seizures in people with DS, the majority of people with DS had no change in seizure frequency (7/8; 88%), or seizure duration (8/8; 100%), after SARS-CoV-2 vaccination, even in the presence of fever. 

Two people with DS who responded to the survey had already had COVID-19 infection before they received the vaccine. They experienced similar side effects to the SARS-CoV-2 vaccine compared to those who had never had COVID-19 infection. 

Seizures after vaccine 

Only one person of the eight people with DS who received a SARS-CoV-2 vaccination reported an increase in seizure frequency.  This individual had one seizure, 11 days after the first dose of the Oxford/AstraZeneca vaccine. This person had been free of seizures for 10 years prior to this seizure.  It is very difficult to be certain whether the vaccine precipitated the seizure. We would need to have information from more vaccinated people to know if there is a link, but it is important to note that seven of eight people with DS did not experience any worsening of their seizures with the vaccination. 

The importance of vaccination and vaccine safety 

COVID-19 can result in serious illness, and has caused more than 2.5 million deaths worldwide.  Some groups of people, including those with learning disability, may have higher risk of death with COVID-19. Vaccination is the most effective way to protect yourself, and others around you, from COVID-19.   

The Pfizer/BioNTech (BNT162b2), Oxford/AstraZeneca (ChAdOx1 nCoV-19) and Moderna (mRNA-1273) vaccines have all been approved in the UK. These vaccines have proved to be safe and well tolerated across millions of people in the general population. 

Mild side effects such as fatigue, fever, pain at the injection site, aching or headache are common after any vaccine, including the SARS-CoV-2 vaccination. These symptoms are not unexpected, and are caused by the immune system responding appropriately to the vaccine. In some studies, taking paracetamol before, and for 24 hours after, the SARS-CoV-2 vaccine, helped some of these symptoms, and did not stop the vaccine from working effectively. 


DSUK thanks Lisa M Clayton, Simona Balestrini, and Sanjay M Sisodiya at the Department of Clinical and Experimental Epilepsy, UCL Queen Square Institute of Neurology, London, UK, for their help in compiling this extract from a manuscript of the full study results, currently seeking publication.