Ehlers-Danlos Syndrome Support Group

Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary from mild to life-threatening. Common symptoms are unstable, flexible joints with a tendency to dislocate and subluxate, and elastic, fragile, soft skin that easily forms welts and scars.

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/ Ehlers-Danlos Syndrome Support Group

frustration with poor medical treatment

n65L4tB
n65L4tB
Hi, this is going to be more of a vent than anything else. I am on Medicaid; so I'm stuck with the doctors that I am assigned to. My doctor seems to have good intentions but does not believe in Ehlers Danlos. I have had trouble with my joints and oral mucosa since childhood. I have also been prone to fatigue----low stamina my entire life. My doctor thinks that all I need to do is yoga and eat a low fat. low protein diet and all my connective tissue/joint/stamina issues will just go away---POOF.
I have a a permanent limp due to old injuries in each leg/ankle/knee. Yet my doc said that yoga will just magically fix it all.
I'm apalled at the level of ignorance that is found in the general medical community.
Thank you for letting me get this off my chest.
n65L4tB
InsideRose
InsideRose
I've had the same problems, unfortunately EDS is controversial and a lot of doctors have very little experience in treating it. You know you're body, do what suits it. I've been in similar situations, even had one doctor tell me all my problems were due to anxiety.

Feel free to message me anytime if you need to vent or chat. You're not alone.
bulldog
bulldog
O m g. It's taken me 16 years to get my daughter diagnosed. I'm now trying for disability. The mentioned eds at age 7 but no one ever wanted to diagnose or label her. She has suffered so much and already had to have a knee reconstruction due to dislocations. She lives in pain and no one seems to get it. Her new dr the one who diagnosed her has been a god send. The first doctor who believed it wasn't in her head.