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Knowing What it Takes

“Walking into a chemotherapy room is not an easy thing to do, even if you know that it is the best thing for you.”

I was diagnosed with PNH in 2009 at the age of twenty-two. In my eyes, I was invincible. I could even count how many times I had gotten sick throughout my life on one hand. So accepting the diagnosis was not easy. I was six months pregnant and pushed all of my worries and fears about my disease onto how it would affect my son. After months of constant anxiety and blood transfusions, my son was born perfectly healthy. With his birth however, I had to face how this disease affected me. I started eculizumab (Soliris®) and my blood counts stabilized, but remained extremely low.

I hated going to the doctor’s office every two weeks and I loathed having to walk into the chemotherapy room. I always picked a chair that was the farthest away from everyone and I would sit and watch. As the months went on, I started to realize I was seeing people at their lowest moments, looking frail and weak. I did not see myself that way and more importantly, I didn’t want others to see me like that. 

After weeks of watching everyone in the chemotherapy room and hearing some of their stories, I realized how wrong I was. They were not the weak and frail beings that I originally saw, but instead were warriors in the depths of a personal battle. These people are among the strongest on earth and I was getting the chance to prove that I could stand with them. Having a disease like PNH does not make me a weak and frail person -- my attitude toward my disease dictates if I am a warrior or not.

I began to read everything I could about my diseases and attended every conference that I could. I chose to live every day with a positive outlook. It was in this frame of mind that I got the news that it was time for a stem cell transplant. I was required to meet with a psychologist as part of getting ready for the transplant. It was in my meetings with her that it really hit me how important your mental outlook is to the success of treatment. I have an amazing sister who matched me as closely as possible and because my counts remained so low, in November of 2011, I received the transplant. My warrior attitude and the amazing support of my family got me through weeks in the hospital and months of recovery.

Like everyone, I had my good days and bad and sometimes it seemed overwhelming, but I tried every day to focus on the good. It has been almost two and a half years since my transplant and I am doing very well. The road was never easy, but the one thing I learned from all this was that having a positive attitude is everything. Not only when you are facing huge trials like having a bone marrow failure disease but with everything that comes on a daily basis. Having a disease doesn't make you a weak person -- your attitude toward your situation determines if you are weak or if you are a warrior.