Chronic Disease and Chronic Condition Support Community
With Ehlers-Danlos syndrome, a lot of energy goes into protecting your joints and into getting care. ShareWell has free online support groups for people living with long-term illness and pain, where people with EDS and hypermobility spectrum disorder can talk with others who understand.
Live groups available daily.
Understanding ehlers-danlos syndrome
The Ehlers-Danlos syndromes, or EDS, are a group of inherited disorders that weaken connective tissue. Unstable joints lead to dislocations, sprains and other injuries, and the hypermobile type, hEDS, has no genetic test, so it is diagnosed from clinical criteria.
How peer support helps with ehlers-danlos syndrome
Peer support can help with EDS because having to fight for care is frustrating and emotional. In a group you can set that fight down for an hour.
What ehlers-danlos syndrome groups often cover
- Joints that dislocate or give way
- Having to fight to get care
- Seeing many different specialists
- Anxiety and low mood that come with long-term illness
ShareWell groups are peer support and do not give medical advice, so please keep working with your care team on anything about diagnosis or treatment. If you are in crisis, call or text 988 to reach the Suicide & Crisis Lifeline.
Who these groups may help
- People with any type of Ehlers-Danlos syndrome
- People with hypermobility spectrum disorder
- People still working toward a diagnosis
Related topics
These topics often connect with ehlers-danlos syndrome and may offer another helpful angle, language, or support space.
Frequently asked questions
Is there an online support group for EDS?
Are the stretching sessions suitable for hypermobility?
Do I need a confirmed diagnosis?
Where can I find medical information about EDS?
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