I work as a nurse and health educator (for some serious but common diseases) but I'm also an ordinary patient, just like you, with 3 rare diseases, and some of the more common issues. I have special interest in medical sociology--the culture of medical community and how
[More] it affects the patients' and care providers'/caregivers' well-being.
I am very interested in learning from others the statistical connections between certain disorders that are still somewhat mysterious--as in, we know what they do to the body and some treatments, even the genetic inheritance pattern--but not much else. These would include inherited or later-onset immune deficiencies (CVID, PID, etc.), MGUS/myeloma/similar blood and bone marrow abnormalities, Ehlers-Danlos Syndrome/Marfan's, and all auto-immune diseases like lupus, MCTD. Also unexplained digestive illness that mimic colitis or celiac/gluten intolerance (but test negative for these) or true colits/celiac disease, interstitial cystitis, unexplained partial seizures, unexplained injury from or response to anesthesia, and unexplained chronic potassium and iron deficiencies.
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