If you're read my profile then you already know something about me people wouldn't necessarily realize when they're introduced to me in person...the fact that I (and most likely my daughter) have both been recently diagnosed with Connective Tissue Disorder. We're still waiting for the blood tests to come back, but right now the geneticist who treats us both has said her bet is either Classical or Hypermobile Type Ehlers Danlos Syndrome.
What's that mean? Depends on which one of us you;re asking about. My daughter has eye problems and skeletal problems and I have dysautonomia. We're both hyperflexible. (Double Jointed) No I'm not at the level of the circus performers in the way I can twist myself into knots but I can bend into creepy looking positions on occasion and on my worst days my joints are both painful and floppy. I combat this (and oncoming early onset arthritis) via exercise in the pool, and general strength training stuff...
Never heard of Ehlers Danlos or Connective Tissue Disorders? You're not alone. I hadn't either and would likely have gone through my life thinking I just had something called P.O.T.S has it not been for my daughter being born with more pronounced skeletal symptoms then I ever had.
Now? I'm researching like mad, and generally trying to make sense of both having a chronic medical condition and raising a child who has the same...
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