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Ehlers-Danlos Syndrome User Group
Questions About Ehlers-Danlos Syndrome?
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
158 members
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Questions About Ehlers-Danlos Syndrome?

Hi there, I'm not sure yet if I have EDS or not, but I'm having a hard time finding support forums and places on the internet where I can talk to other people with EDS. However I'm very glad that I found this support forum. My skin bruises extremely easy and I have a huge problem with stretch marks. I haven't gained weight or had any of the issues that usually come with getting stretch marks. I am seeing an Endocrinologist at this point to rule out pituitary issues and cushings disease, but I can't find a good doctor to see about getting a diagnosis or ruling out EDS. In the past I have been to a lot of doctors and had some really bad experiences that have made going to a new doctor a total nightmare. On top of that I have developed severe PTSD due to the loss of my signifigant other. So I know that I NEED TO FIND A GREAT DOCTOR OR SPECIALIST TO DIAGNOS OR RULE OUT EDS BECAUSE I JUST CAN'T DEAL WITH GOING TO SOMEONE WHO SAYS THAT THEY CAN'T FIGURE OUT WHATS WRONG WITH ME OR THAT THEY DON'T KNOW WHAT I HAVE. So I guess I'm asking WHERE IS THE BEST PLACE OR DOCTOR TO GO TO WHO REALLY KNOWS A LOT ABOUT EDS AND WHERE ELSE ON THE INTERNET CAN I GO THAT HAS A FORUM AND OR PLACE TO CHAT WITH PEOPLE WITH EDS? SORRY ABOUT ALL THE CAPS.
3 Comments
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Hi!  If you are anywhere near the East Coast, you should try to see Dr. Clair Francomano in Baltimore, and there is Dr. Brad Tinkle in Cincinnati. He's a pediatrician, but sees adults for EDS diagnosis.  These are the top two, that I know of.
There is tons and tons of information on the Ehlers-Danlos National Foundation Support Community on the inspire ******* website.  Hundreds of members, very eager to share information and stories.
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Oh. And also Dr. Alan Pocinki, in Washington D. C.  What part of the country are you in?
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620923_tn?1416285879

  Hi and welcome to the EDS group.

First u can look at the videos that r linked in the top thread, they r by a Dr that also has EDS, she explains the diff types of EDS as well as symptoms...enzymelover gave u 2 names of Drs, I am familiar with Dr Francamano....she is one of the top EDS drs here on the east coast that I am aware of.....

If u have ne other questions , please ask.
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