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Ehlers-Danlos Syndrome (EDS) Support Groups Online

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.

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Topic context

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.

Why it helps

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.

Inside the room

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.

Good fit for

Who these groups may help

People with any type of Ehlers-Danlos syndrome
People with hypermobility spectrum disorder
People still working toward a diagnosis

Keep exploring

Frequently asked questions

Is there an online support group for EDS?

No EDS group is running on ShareWell currently. This page shows groups for people with chronic illness and chronic pain, along with gentle sessions, and people with EDS or HSD are welcome to join them.

Are the stretching sessions suitable for hypermobility?

They are general sessions and are not designed for EDS. Any movement is optional, so please follow the advice of your own care team.

Do I need a confirmed diagnosis?

No. You can join while you are still looking for answers.

Where can I find medical information about EDS?

The Ehlers-Danlos Society (ehlers-danlos.com) has information on every type of EDS and on hypermobility spectrum disorder.