Some good info here. I was just talking abt my PNH treatment; in my case a stem cell transplant-no Soliris, w/ my cousin who is a nursing instructor. I always tell people that PNH is diagnosed in abt 1 in 1.5 million people. I always ask the staff at the clinic I go to in Denver Co if there are any new patients w/ PNH. The last doctor I asked said that they get abt 3 every year. Only 2 hospitals in the Denver area perform stem cell transplants on adults, according to what I have been told, and I know of some other patients w/ PNH in Colorado who are treated by different clinics/ specialists. What we can all take away is that if you are diagnosed w/ PNH, make sure your doctor is experienced in treating PNH, and there are many resources online to assist patients w/ finding a specialist.
MARIO, 46, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD.