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About this Community

About this community

The Ehlers-Danlos Syndromes and Related Disorders Support Community connects patients, families, friends and caregivers for knowledge, support and inspiration. This community is sponsored by the Ehlers-Danlos Society, an Inspire trusted partner.

Community topics
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Newly diagnosed
Classical EDS (cEDS)
Hypermobile EDS (hEDS)
Vascular EDS (vEDS)
Rarer EDS Types
Hypermobility spectrum disorders (HSD)
Artery/heart/cardiovascular issues
Orthopedic issues (bones, joints, and muscles)
Dermatology/wound healing
Physical therapy and exercise
Mouth and jaw issues
Gastrointestinal issues
Neurological issues
Pain management
Allergy, immunology & mast cell disorders
Eyes, ears, nose and throat
Autonomic dysfunction
Pelvic disorders
Psychiatric and psychological issues
Children and teens
Skin
Diet and nutrition
General discussion
EDS awareness
Humor
Family and caregivers
Local support groups
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New
New reply March 26, 2024 • 8:28 PM

Does anyone know of a colorectal surgeon in the LA area who works with EDS patients? Needed urgently to fix ileostomy issues that has required 3 revisions so far.

kjinuk231 replies1 Reactions

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New reply March 27, 2024 • 12:59 AM

Hi everyone! I saw my rheumatologist last week. She said something confusing and I'm wondering if anyone else has had a similar experience. I was diagnosed with HSD around this time last year. I've ... Show more

shannny10 replies0 Reactions
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New reply March 27, 2024 • 10:06 PM

Hi all! I was wondering if anyone here has experience with knee replacement surgeries. I'm 50 and have grade 4 arthritis in both knees requiring knee replacements. The doctor I saw recently said I wo ... Show more

robinsteeley6 replies3 Reactions
New reply March 24, 2024 • 5:53 PM

I know that for a lot of us pt doesn’t do much but in the months I’ve been doing it I’ve actually improved mobility and gotten back to things I’d lost

Member_Wolf52913 replies7 Reactions
New reply March 20, 2024 • 6:57 PM

Hi there Is there a way to disgnose cci besidrs upper flex mri? I cannot find one in Ontario canada. Dis anyone have any luck with something elde like ultrasound, mri while kying or something else? ... Show more

SemiCat2 replies2 Reactions
New reply March 22, 2024 • 8:37 PM

I frequently have issues with my shoulders, which ends up causing issues with my arms and hands. I've been to PT several times before and while the exercises helped to relieve some of the pain, the is ... Show more

Dreamywriter12 replies4 Reactions
New reply March 20, 2024 • 6:55 PM

So I was looking through my medical records and stuff that doctors never told me. I have mild dextrocurvature of the thoracic spine, reversal of the cervical lordosis, slight retrolisthesis of C2 on ... Show more

sabytorres82 replies5 Reactions
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New reply March 22, 2024 • 2:06 PM

Has anyone tried that Inspire Sleep implant for sleep apnea instead of CPAP?

sisterdoctor6 replies3 Reactions
New reply March 22, 2024 • 3:59 AM

I would really really like to know how many people diagnosed with hEDS or HSD actually have Osteogenesis imperfecta! Have any of you come across any research on this?

jadecat22 replies3 Reactions
New reply March 20, 2024 • 6:31 PM

Does anyone have High Myopia? I have been diagnosed with HEDS. I am 62 years old. My RX for my eyes is -12.25. About 2 years ago I was seen by a neuro-ophthalmologist and was told my optic nerves wer ... Show more

jls613 replies2 Reactions