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Ehlers-Danlos Syndrome User Group
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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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Please Help

I am a mid 30's mother of a 6 year old boy and after a very long life of ignorant doctors and hospitals, I have been diagnosed with Ehlers-Danlos Marfanoid Syndrom (syndrome).  I have been looking it up.  Umm... I am not sure what to feel validated, scared, angry, there are so many different emotions to many to name. I don't know. But, I do know that I don't understand it.  I live in BFE.  Somebody please help I don't know what or where to go from here.
3 Comments
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620923_tn?1405964489

Hi and welcome to the EDS group.

I hate to say u r the first to have marfans and EDS combined....and I am not sure where BFE is, what does that stand for?...sorry....

I know there r good rheumatoid Drs out there and would suggest searching out one that specializes in EDS/Marfans to get the best care possible.Be advised, u may have to travel to get to one, but it is well worth it when it takes a life time to get a dx, I know...I got my EDS dx at age 48.....

Let me know where u live...area wise and I will see if I can offer ne suggestions.

   "selma"
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Thanks for your post.  I live in wyoming.  I have done some research and it looks like maybe I have marfanoid hypermobility syndrome. May I ask did you laugh or cry when you finally got diagnosed.  Im still not sure which to do.
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620923_tn?1405964489

  I was in shock.....as I had gotten a chiari and tethered cord dx b4 my EDS  dx, and I really did not think I fit the criteria......

The best thing u can do is find a Dr that specializes in this area of expertise... and u have basically 2 different issues like I have several ...and we need several Drs at times to take care of them.

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