I just finished a fantastic zoom meeting with a researcher I found through clinicaltrials.gov. I am not sharing his name now as I am waiting for permission.
I was initially interested in finding a genetic marker for hEDS, similar to Dr. Norris's study.
During our conversation, this doctor asked me about my Vitamin D levels. I'm very embarrassed about sharing my Vitamin D story, as I get discredited whenever I share them with anyone, especially doctors. I decided to share it and gave my usual disclaimer: "I have proven it for myself on various times via blood work." Coming to find out this very doctor has done research about this, and he is the first doctor not to discredit me.
I'm beyond excited right now and I want to go into details and share them with you all. But like I said, I am waiting for permission to name this researcher and share more about the conversation and Vitamin D story. Just let me tell you, his story goes along with my struggles and many issues we face with Ehlers-Danlos Syndrome / rare disease awareness.
STAY TUNED!
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