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Ehlers-Danlos Syndrome User Group
sharing info from end of September (Selma I forgot to post it)
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
156 members
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sharing info from end of September (Selma I forgot to post it)

The children's hospital was good today!
They were very thorough and even knew what EDS was:)
They even commented on her loose kneecaps.
They do suspect cranial instability for Ry.
They sent her for neck and complete spine X-rays.
They will review them and refer us to the spine Dr and PT at children's
hospital.
She said PT is a fine line because the joints are hypermobile so we must be
careful there but she has some muscles that are too tight trying to compensate
so we need to find a happy medium.
They are referring her to genealogy too.
She said we don't need genealogy to know she has EDS but it is a piece of the
puzzle.
She also ordered cardio and agreed with me that POTS was something we need to
look into.
So it's a start and I'm excited they didn't look at me clueless!
They also said soccer is probably a bad idea:(
Tags: EDS, Ehler danlos, Hypermobility
8 Comments
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620923_tn?1405964489

  Hi Mel.....well I told u about my feelings about the soccer....I know she wanted to finish the season, but sometimes it can not be avoided.

Keep us posted on the POTS and other testing she has and the results.....
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1903798_tn?1333908888
Yeah I just copied and pasted this from our old email because you asked me to share it so you knew more current information too:) still might be helpful for others to see the journey if they are starting later than us
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620923_tn?1405964489


  I agree with u on that Mel....some may come here and not the Chiari forum.....so for them it is good to double post : )
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620923_tn?1405964489


  I agree with u on that Mel....some may come here and not the Chiari forum.....so for them it is good to double post : )
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1903798_tn?1333908888
You are the only one that comments when I say anything in the chiari forum anymore.  I think everyone from my cycle has cycled out.  
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620923_tn?1405964489

  Could be ...there r a few recovering from surgery too,.....but the group changes every 6 months to a yr....u do not plan on leaving do u?  : (
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1903798_tn?1333908888
Nope:) and even when I'm not able to check in as much I email you...you're stuck with me
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620923_tn?1405964489


  good : P
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