As we begin 2021 with a new vaccine on offer and the possibility of a slow return to something like normal life, many members of the dystonia community are asking whether the COVID-19 vaccines are safe for them. 

We asked our medical advisors whether the COVID-19 vaccines are safe for people with dystonia.

According to Professor Mark Edwards, there is no reason to believe people with dystonia face a higher risk of side effects than anyone else. This includes those receiving botulinum toxin treatments.

Conversely, for some people with dystonia (e.g. those with severe generalised dystonia perhaps due to a degenerative disorder where breathing is compromised), they would be in a high risk category for developing problems from a COVID-19 infection. Professor Edwards suggests those whose breathing is affected by their dystonia seek the vaccine early, in line with government guidance for vulnerable people.

Ms Lucy Hicklin agrees and followed up by adding that she will be encouraging their patients to get the vaccine as soon as they can.

In relation to children Dr Jean-Pierre Lin further explains that there are no known direct concerns for children with dystonia receiving the vaccination. In fact, Dr Lin says specialists have noted a severe COVID-19 side effect, which mimics Kawasaki Syndrome, in a small number of children in their early teens. Dr Lin points to this evidence as part of the reason why he will be supporting vaccination in children with dystonia.

Dr Lin, Professor Edwards and Ms Hicklin remind everyone to consult their GPs or hospital consultants about any concerns they might have.

For more information about the vaccines for COVID-19 and how it will affect you, please speak to your individual medical team.

You can read our latest guidance on coronavirus (COVID-19) and dystonia, and where to get support here.