- This topic has 1 reply, 1 voice, and was last updated 8 years, 6 months ago by .
- You must be logged in to reply to this topic.
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.
This website was created to inform, educate and brainstorm with fellow patients and doctors. The content should not be used as a substitute for professional medical advice, diagnosis or treatment. Readers are encouraged to confirm all information with other sources and their physicians. The creator of this site will not be liable for any direct, indirect, consequential, special, exemplary, or other damages arising from the use of this website.
“Dr. Diana will always hold a very special place in my heart for her selfless devotion to helping everyone, not just the Ehlers-Danlos community. I hate to think what my life would be without her insight and guidance.”
-- Chris Gross