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Ehlers-Danlos Syndrome User Group
Do I Have 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
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Do I Have Ehlers Danlos Syndrome?

Do I Have Ehlers Danlos Syndrome? MY symptoms include: my fingers have that swan neck look to, and they become very hyper extended whenever I straighten until it hurts. I can bend over and touch my palms to the floor without bending my knees, I have sore joints, I can touch my thumb to my wrist, I might've dislocated my ribs before but im not positive, I get frequent sprains, I bruise easily, im very pale, you can see my veins everywhere on my body especially my eyes (head), legs, and arms. Please, I need someone to answer this asap.
4 Comments
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  Hello Madi,  It does sound like you may have Hypermobile type EDS. If you are looking for a formal diagnosis, your best chance would be a geneticist, preferably one who is knowledgeable in connective tissue disorders. Even though there is no genetic test for Hypermobile EDS, you would be more likely to be given helpful info at a genetics clinic.
Do you have a medical university hospital near you?

You can check EDNF  dot org for tons of information.  Their Inspire patient forum is one of the most active, knowledgeable, friendly places to get all your questions addressed.
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620923_tn?1416285879

  Hi and welcome to the EDS Group.

As the above poster mentioned, it does sound like it is possible for u to have EDS.....

  I know of  a EDS specialist in the Baltimore, MD area...but u r out in the Western Part of PA so a bit of a trek to come east, but u will deff need a Dr well informed with this condition and related conditions.


My ribs are the one thing that I know keep shifting out on me....and it is painful....

  And we do have info on EDS here in our Health Pages....to access go to the Chiari forum and find the link at the bottom of  the page.  http://www.medhelp.org/forums/show/257?camp=msc

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I am also concerned about having EDS.  I do not have extra flexibility in my joints, I also don't have translucent skin, nor do I bruise easily(to my knowledge).  The symptoms I do have is: flat feet, and gingivitis.  However, I haven't taken care of my dental health very well due to being very tight financially, so I'm not sure if that is relevant.  My main concern is about the vascular type of eds..  Are there symptoms I would most certainly have if I had that type?
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620923_tn?1416285879

  Hi and welcome to the EDS forum.

I also do not have translucent skin...and I did not think I was very flexible...so do not let what u think or feel keep u from testing to rule it  out clinically....having EDS and flexible joints or lax joints also means our  muscles get tighter trying to hold us together so we feel we r not flexible, but another person may be able to move our joints past a normal range with ease and no pain....this was my case,...my fingers are visibly lax.....but the rest of me, no way I can maneuver in ways others that are flexible can...

Again, have urself tested .

Once u have it ruled out, u can rest assured on the vascular type.

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