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Ehlers-Danlos Syndrome User Group
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
157 members
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EDS

My DD was diagnosed with EDS today...
Did you know that hyper mobility type has a 50% chance of being passed on?
11 Comments
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620923_tn?1405964489

  Had no idea, but I know my sisters have it too, just can not get  them to listen...one thinks she has fibro and another just thinks she has lax skin for no other reason then that...ugh.....her skin is so stretchy it is weird....and she has so many weird allergies like latex, sulfates, chocolate....just a few that come to mind....

My other sister, so far I mentioned the oldest who thinks she has fibro, and who could walk on her knees in a pretzel position and put her legs behind her head... and the one a yr younger then me, now the youngest of all 3 of them was super lax, she was so gangly as a child....and slept in contorted positions...looking back I can understand it  now...I had no idea then, I always hurt and would never try to put myself in those positions.....I most likely would have been able to...

and I can only see this as a pass down from my dad....

Thanks for that info.
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1903798_tn?1333908888
I didn't know EDS affected hearing in some either until researching for her.  Selma does EDS cause allergies?  My Laney has horrible allergies.
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620923_tn?1405964489

  Yes, it can start with things on the skin like perfumes, laytex, soaps,etc...and move on to foods and even meds, I never really thought I had allergies, but I do have allergies to perfumes, always did, and some jewelry, I would get a rash....now I have issues with pepper, and certain meds.

I was told those with EDS not only can develop an allergy to a med they had taken successfully b4, but can also lose the ability of the med to be effective....I had that happen with taking Prilosec, it just stopped working for my reflux.... and I had surgery in Aug, and then another in Oct and could not have the same pain meds as I was now allergic....weird.
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1903798_tn?1333908888
I never imagined how sad I would be that it was my DNA passed to her that gave her this....stinks:(
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620923_tn?1405964489

  Mel, there was no way to know u just got ur Dx....my mom feels bad too, and I can not blame her either, and she should not blame herself it is not their fault...there was no way to know....

What I do not understand is y did they stop doing blood testing for marriage license's? Mayb they could look for things like this....???
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1903798_tn?1333908888
Yeah but many types of EDS are not diagnosed that way...could make some things known but still not many others...
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620923_tn?1405964489

  True, but I still think there must be a way to know some of the things going on.....when I was pregnant with my DD they told me that  there were physical deformities....I freaked out, and had to wait 2 weeks until they could  rerun the tests,,,(not sure y) but when they did they claimed all was fine, in the intrum  they wanted me to do an amnio which could have made me lose the baby, which she turn out perfect, but what I am getting at is the physical deformity they picked up mine? Makes me wonder.....
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1903798_tn?1333908888
Now that you say that I miscarried a child before my youngest and they said my uterus was backwards and tilted.  I also had tennis elbow and like ou thought um I don't play that and had to wear wrist braces as a teen for a ti e from tendinitis
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620923_tn?1405964489

  I miscarried as well....and my pelvis and uterus r out of whack....I am not sure if mine is from Chiari, EDS, TCS or DES....ugh...too many issues all at once...

  Strange, I also did not feel I did nething with repetition to cause it either....and when writing my whole arm up to my elbow would get sore and stiff that my hand writing was hard to read, it would get so sloppy looking and I could not make it look nicer....
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1903798_tn?1333908888
That is the one thing that they always told me too was to improve my handwriting...makes my fingers hurt lol
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620923_tn?1405964489

  Well could be I did a lot of writing mayb that is what affected my elbow as it is my right elbow and I am right handed....hmmmm
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