Janet
I was recently diagnosed with HH-double mutation. My FE was 3125 and 97%saturation. Now I am at 4185 with 90% saturation. The oncologist says I am difficult and slow as phleubotomy patient. I am only able to give blood once every 2 weeks and now it is only at 1/2 pint because I am also anemic and fainted back in Sept. As far as family goes, I am the only one diagnosed. My mother died of Alzheimer's, her brother of Amblyosis. My daughter has single gene, my one brother tested neg. and the other refuses. My father has type A diabetes, gout, and high blood pressure and considers himself too old to have diagnosis. Currently I have elbow pain and chest pains but manage. I started with extreme pain in hands. It is a frustrating illness because the medical field does not consider it's widespread spectrum of complications. I often feel as if I am viewed skeptically by the very people I look to for further help. Are there other's who feel the way I do?