Updated: January 5, 2022
In general, having HSD or EDS is not considered at this time a high risk. However, if for any reason (which may or may not be related to your HSD or EDS) you have one of the high or moderate risks listed, then your case would likely be considered a priority for COVID-19 vaccination and you should talk with your doctor. Please check your country’s prioritization list. The USA CDC priority list can be found HERE, and the UK list HERE by way of example.
The Ehlers-Danlos Society has received a number of inquiries as to whether people with EDS or HSD should have a COVID-19 vaccination. We are not aware of any studies that have looked specifically at EDS or HSD. Many with EDS or HSD have chronic and complex health concerns that potentially could worsen with COVID-19 infection. For the majority of our community, like so many others with chronic illnesses, the benefits of protection against the COVID-19 virus are likely to out-weigh the risks associated with having the infection (including Long Covid) or getting side-effects of the vaccination.
That said, an individual with EDS or HSD may have a history of severe reactions to injections such as the flu jab or pneumococcal vaccine, or they may have a history of anaphylaxis. In these situations, or if there are specific health concerns, individuals should discuss the risks of having a COVID-19 vaccination with their attending doctor.
The Society has also been asked about protein-based vaccines versus mRNA vaccines. A lay summary of how vaccines work can be found on the CDCs website here.
A summary of what mRNA vaccines are is available here.
In addition, the CDC has produced general advice for Clinicians that is available here.
A number of our community have allergies and intolerances to medicines. Those with a history of severe reactions, for example needing to carry an adrenaline autoinjector to treat anaphylaxis, should follow the MHRA advice or discuss their concerns with their doctor.
The MHRA has issued the following advice: “Anyone with a previous history of allergic reactions to the ingredients of the vaccine should not receive it, but those with any other allergies such as a food allergy can now have the vaccine.”
EURORDIS have published a press release on equitable access to COVID-19 vaccines to vulnerable populations in Europe and beyond. In this press release, they call on European and global leaders to urgently take steps towards equitable access to COVID-19 vaccines to save lives globally and locally, protecting first those at high risk, in particular people with comorbidities, including people living with about 30 different rare diseases, as recommended by European Reference Networks experts.
EURORDIS also strongly supports the WHO Vaccine Equity Declaration and call for equitable distribution of vaccines against the coronavirus globally.