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.
Contact
7918 Jones Branch Drive
Suite 300
McLean, VA 22102
Phone: (703) 506-2892
Fax: (703) 506-3266
info@ehlers-danlos.com
www.ehlers-danlos.com
Community Leaders
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.
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
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
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
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
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
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
Has anyone tried that Inspire Sleep implant for sleep apnea instead of CPAP?
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?
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