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Ehlers-Danlos Syndrome Online Support Group

Welcome To EhlersDanlosSyndromeSupport.org


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We are part of the Ben’s Friends Network, whose mission is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them. We’re glad you’re here


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Thank you. I was diagnosed, but never really shown a way to live with it or what it all meant. I’ve been doing my own research day in and day out, it’ so confusing trying to figure it ouby yourself. I am badly prolapsed from my pelvic floor down, where my cervix and double prolapsed rectum were even coming out of my body, I am still waiting to find the right surgeon to fix this problem. for the meantime, they did a loop ileostomy, which I have been sick from ever since they performed it this past summer. Is anyone else out there going through similar situations that have had different succeses? I really do not see this ileo lasting, its been one terrible problem after the next with it. I need friends, and not to be so alone in all that I am going through. There is so much more than this. I have so many questions without good answers. (this isn’t an easy area to do your own research) or well to even know when you have fournd "a good dr who truly understands EDS or you wake up to find out they didn’t have a clue and now you are in hell.

I’d really appreciate anyone who will talk to me.