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ehlers danlos sydrome

sunshine1234sunshine1234 member
in Special Needs
anyone hear of or know anything about ehlers-danlos sydrome? it is a conneectutive tissue disorder...
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Re: ehlers danlos sydrome

  • sunshine1234sunshine1234 member
    Was it  genetic? How did they know she had it? Why surgery?
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  • jsugrinjsugrin member
    There is someone on my local board with EDS, she also frequents in the Attachment Parenting Board, in fact she's probably more active there. If you posted the same question over there I'm sure she'd be happy to talk with you. 
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  • haleybeth81haleybeth81
    My girls were tested for it because they have hypotonia and really loose joints but were negative.  It's a problem with the production of collagen if I remember right and can have different presentations.  There is a great foundation that gives you tons of info and assistance if your child has it.  It's  https://www.ednf.org/ and it really helped me when we were in the process of testing.  GL
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  • DexLGCDexLGC
    Yes, I have it (hypermobility type--the most common). What do you want to know about it?
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  • sunshine1234sunshine1234 member
    DexLGC can you tell me more about how you became diagnosed with it? Can you email me at alishalovescats@yahoo.com    Thanks...
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  • Jaci85Jaci85
    I have Ehler's-Danlos Hypermobility type and found out last month.  Any pregnancy problems with it?
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