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Ehlers-Danlos Syndrome User Group
new to eds........
About This Group:

This group is for members with any form of Ehlers-Danlos Syndrome.We have this group to share info and support for each other. Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders characterized by articular hypermobility, skin extensibility and tissue fragility. Individuals with EDS have a defect in their connective tissue. It is this tissue that provides support to many body parts such as the skin, muscles, ligaments and organs. The fragile skin and unstable joints found in EDS are due to faulty collagen. Collagen is a protein that acts like glue in the body adding strength and elasticity to connective tissue.

Founded by somemonkey on September 22, 2009
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new to eds........

my nl is pretty sure that i have eds type 3. im seeing a rheumatologist this mon and if he confirms it than i will be refrerred to a geneticist. any suggestions for my appt mon on what exactly to say to the rheumatologist? i also have chiari and autonomic dysfunction. thanks, Dana
2 Comments
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1903798_tn?1333908888
Dana study the web and be prepared to state why you feel you have EDS.  Even though rheumatologist treats EDS they don't all know what it is.  A good rheum Dr. will check you thoroughly and you need to tell them when you feel any pain.  I last time asked about something when we were done and he said your pain level was not bad at that location.  I said no that location hurts me more than any you did not ask and I can tolerate a lot of pain.  When they are pushing on your trigger points they need to know any discomfort.  I recently have went back to my rhuematologist  and feel like treatment is helping yet EDS is tough to get diagnosed and tough to get treated.   I also have osteoarthritis from EDS and allover trigger point pain.  Good luck!
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620923_tn?1405964489

  Hi Dana..sorry I missed ur post....Mel gave u some good tips...the video's at the top of this form is filled with helpful info....

I hope u look at the video's by Dr Driscoll....she also has EDS so I really think  she understands how this affects us and can offer the info and insight u may need.
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