I last gave blood in December 2004. When I went again in March 2005, I was informed that I couldn't give and actually really needed a transfusion.
Eventually I was diagnosed with pure red cell aplasia, PRCA, a very rare condition where I don't make red blood cells. I struggled with transfusions and various medications for about three years. In April 2008, I found Dr. Maciejewski at the Cleveland Clinic and a doctor at the local medical school here in Dallas. They added an additional medication to the mix. I have been steadily improving during that time and reached normal hemoglobin levels in March of 2013, but I still take medications. My visits to Cleveland have helped Dr. M. with some of his research as well as helping me.
Besides the fatigue and other issues of PRCA, the biggest struggle has been that so few people have PRCA that there is nothing close to a support group or even finding other patients. I am constantly on the lookout for them. This is one of the reasons that I volunteer to help with The Hope Step and a Cure activities.
I'm looking forward to meeting all of you on March 22 in Houston!