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My grandmother passed away Friday morning, so we’ve had a family gathering for the funeral which was held today. In talking with various family members I have learned SO MUCH! I’m still reeling!
First is that my grandmother was diagnosed years ago with a “connective tissue disorder”. I never knew this!!
Next was that my dad’s cousin had surgery to correct Chiari I Malformation!
Then there is the fact that there are NUMEROUS people, both young and old..all ages….with low blood pressure when resting and/or reclining BUT with tachycardia on standing. Eye problems, varying degrees of hypermobility, a great-aunt with GI dysmotility…wow wow wow!
We had a GREAT talk, exchanged e-mail addresses and I gave them the web addresses for EDNF and DINET and HERE! I also gave them related terms to look up…CCSVI, MCAD, POTS, dysautonomia, OI. They all voiced that they’ve thought for a LONG time that there was something “not right”…a high incidence of odd medical problems.
I just sent Dr. F’s office an e-mail asking them to go ahead and set my appointment without waiting for the eye exam (Dr. D…have to reschedule…sorry!) because I am convinced now, more than EVER that I am right.
I am SO tempted to go to medical school. Seriously! I’d SO specialize in EDS and its related problems. I have no concerns about being able to handle it academically although it might be a challenge physically. Just have to find the funding.
Sorry for your loss but glad to hear you got more pieces to the puzzle.
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