Many people in the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) community experience symptoms and complications of comorbidities that are also seen in Long COVID. These include, for example, chronic fatigue, brain fog, headache, POTS, gastrointestinal concerns, and mast cell activation disorders. The mechanisms driving these comorbidities may be the same/similar in EDS/HSD and Long COVID.
Recently published research also suggests that generalized joint hypermobility is a risk factor of developing Long COVID. How this risk affects people with joint hypermobility including people know to have EDS or HSD is part of ongoing studies.
- For some people with EDS or HSD their symptoms flare having caught COVID-19 but settle back to a familiar state once recovered from the infection.
- For others the symptoms flare and persist in worsened state. In effect these individuals have EDS/HSD and Long COVID and it is difficult to separate the related problems out. That said, the treatment is the same.
- For others with joint hypermobility, acute infection and development of Long COVID symptoms may expose the fact that they have EDS or HSD for the first time.
At The Ehlers-Danlos Society we continue to support researchers and are undertaking our own research to understand causes of the many comorbidities that affect our community. We also closely monitor the Long COVID research and updates on treatment as we believe advances here can help our community in general.
At our events, and throughout or education work we have been advocating for several years that the skills healthcare professionals have and the treatments they can offer for Long COVID are also skills and treatments that can help the EDS and HSD community with multiple and often complex comorbidities regardless of whether they have Long COVID or not.
Assoc. Prof. Dr Alan Hakim, Chief Medical and Scientific Officer
The Ehlers-Danlos Society
