Hey Tony, we are all sorry to hear that you have PNH. I was probably around your age when I 1st started having symptoms but was never diagnosed until a long time later when I could no longer ignore the symptoms. I did not research my disease until after I was diagnosed. I had a blood test done in 2011 and the dr himself called me to tell me the results. I super low HGB and RBC'S. I could tell he was pretty freaked out. I met with a specialist in short order and then had a bunch of tests done, BMB, etc. That dr emailed me saying that he was worried that I have PNH. He was right. He was going to treat me w/ SOLIRIS but then changed his mind, primarily bcse he had only treated 1-2 other patents w/ it. (this was in 2011)I actually met one of the people at a PNH conference who was part of the trial. Anyway, it was determined by him and a specialty clinic that I was a good candidate for a transplant, and a donor was found pretty quickly. I am actually part of this study
http://www.bloodjournal.org/content/...o-checked=true
pretty crazy, I know. As far as myself, I had debilitating fatigue, severe headaches and abdominal pain, etc etc. My disease progression got worse and worse the closer I was to being diagnosed, so I was pretty relieved to know that something could be done. I have a lot of posts here, and we are all willing to help you out w/ any questions you may have.
Mario