COVID-19 [Coronavirus] Update

Updated: January 6, 2023

EDS - COVID-19 Update

We know members of our community are feeling overwhelmed with the current situation with Coronavirus Disease (COVID-19). We will continue to update this page regularly in line with recommendations from the WHO [World Health Organization], the Center for Disease Control and Prevention [CDC], and other official sources. Throughout these webpages, we will use the term COVID-19 to imply Coronavirus / Coronavirus Disease and referring to the causative virus SARS-CoV-2.

The wellbeing of our community and health professionals is our utmost priority. Given the current situation, we have postponed some of our events. Our helpline is also receiving an increasing number of calls and emails of concern. We would like to reassure our community that we will do our very best to help you with questions you may have. We have scheduled additional Let’s Chat – Virtual Support Calls.

From the onset of the Coronavirus (COVID-19) pandemic, The Ehlers-Danlos Society learned from its Helpline and Support Group program that members of the EDS and HSD community were experiencing a deterioration in well-being considered to be a consequence of disruption to normal levels of care, and, imposed social restrictions. Here you can read about two studies that have explored the experiences of people with EDS or HSD; the first titled “Self-Reported Changes in Health Status During the Coronavirus Pandemic: A Survey of Individuals with Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder”, and the second titled “The Impact of the COVID Pandemic on Dietary Changes and Gastric Symptoms in People with Ehlers- Danlos Syndromes.”

The Global Registry for EDS, HSD, related symptoms, and associated conditions was established in 2016. To date, the Registry houses diagnostic, demographic, and medical history data on over 10,000 participants of all ages worldwide with either EDS or HSD. Using the Global Registry, the aim of the study was to explore the impact of the COVID-19 pandemic on the EDS and HSD community.

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