My family physician is pretty sure I have hypermobility type Ehlers-Danlos Syndrome (EDS). However, she has no experience with it. I went to a local Rheumatologist today and boy, what a joke. She had no idea what it was, and couldn't care less. My understanding is that many EDS patients see rheumatologists, I just need to find one in my area who had experience treating it!! I'm in Saginaw, MI, but I would be willing to travel elsewhere in Michigan if someone knows of a knowlegeable, helpful doctor. Any help is appreciated, I am in a great deal of pain and can't take much more. Thanks in advance for your help!!
Answer:
I dont know if I can help you, but my mom and I both have EDS hypermobility type. It's not a big problem for me now but I understand it will get worse. My mom and I have run into the same problem as you have, that no one knows what it is or how to treat it. However she ran into a very talented physical therapist who has been identifying her problem spots and working with them as they come and my mom has seen a lot of improvement. This physical therapist is innovative and open to ideas. My mom used to think her knees were beyond repair and now they dont bother her. Now we arent in MI, but my advice to you is that perhaps a doctor with experience with EDS isnt necessarily what you want (because I dont know that you will find it) but rather a doctor that is good at what they do and willing to learn about our type of EDS (the fact that your rheumatologist didnt care is a bad sign). My mom doesn't understand what is so helpful about a rheumatologist. She recommends a good GP and a good physical therapist. I wish you the best of luck! I understand how painful this disorder can be.
Ehlers-Danlos Syndrome (EDS) is a genetic disorder that can cause stretchiness in the skin or incredible flexibility in the joints. like a said, Ehlers-Danlos Syndrom is a genetic disorder and medical science states that most genetic disorder are untreatable. sorry. But don't worry, It might be fun. think about, stretchy skin and extremely flexible joints. Ever heard about Garry Turner? he also has EDS and he holds the world record for stretchiest skin.
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment