EDS and coronavirus (COVID-19)

Updated 19 March 2020

It is understandable that people with EDS and associated health challenges are worried about their risk of contracting the new coronavirus which causes the illness COVID-19. As the virus is newly identified, there is very little known about how it affects people and there is no specific advice for people with EDS. It is not proven that people with EDS are any more likely than others to catch or become ill from viruses. Therefore we advise following the NHS’s advice on social distancing, hygiene and what to do if you have coronavirus symptoms.

The government issued new advice on 16 March for people with certain health conditions. This can be found here.  None of this specifically relates to EDS.

If you have another health condition as well as EDS, for example PoTS, asthma or another chronic lung disease, diabetes, heart disease or cancer or you are taking medication which suppresses your immune system, you may be more vulnerable to becoming  seriously ill with the virus. PoTS UKAsthma UK, Diabetes UK and Cancer Research UK have all issued more specific guidance for people affected by these conditions. EDS UK is continuing to monitor the situation closely and we will advise of any significant changes that may impact people with EDS.


How is COVID-19 currently affecting the services provided by EDS UK?

Like many organisations we have taken the decision to allow our employees to work from home and we are committed to doing our bit to keeping our volunteers and employees as safe as possible during this difficult time. Whilst COVID-19 is making things more difficult, we are not only committed to continue providing support but also adapting our services to the unique environment we find ourselves in.

Over the coming weeks, some face to face support group meetings may be moving online to ensure that we can continue to support members in a safe and practical way. Those meetings will now take place using the Zoom platform.

In addition to support groups, we are now providing new online services to help members who are isolated at home. All these services are hosted on the zoom platform:


  1. New weekly online clubs: 2 book clubs, a puzzle club and a crafting club. Everyone is welcome and it is free of charge to attend for EDS UK members. Please look at our weekly newsletter for more information on when these are taking place. For times and joining instructions, please click here.


  1. A peer support meeting: to help members deal with anxiety every Tuesday at 12:30. For times and joining instructions, please click here.


The Zoom platform can be accessed free of charge from your phone, laptop, tablet or computer. Nikki Casey, our Senior Communities Manager, will be online on the Zoom platform every Monday for the foreseeable future from 1pm-3pm so that any members wishing to practice joining or to see what Zoom is all about, can log in and see how it works and have a chat. To do this, simply click this link on Mondays between 1pm and 3pm. If you have any issues joining this meeting, please call 0208 736 5606 for immediate support between 1pm and 3pm.

If you have any general queries about these new services, please call the office on 0208 736 5604.

Our helpline remains open, 09:00 – 17:00 every Tuesday and Friday. Outside of these hours we suggest leaving a message on the helpline voicemail and we will call you back on the next day it is open.

The office remains open (all be it virtually) for all membership and general enquiries, and the best way to contact  us is by emailing info@ehlers-danlos.org or calling 0208 736 5604.

Image by Gerd Altman from Pixabay.

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