At the age of 3, I became ill with a rare blood disorder. I was bruising easily, and my platelet count was dangerously low. I was diagnosed to have ITP, had my spleen removed, and thought I was cured. However, my disease was either dormant or morphing into something else. My symptoms recurred with pregnancy, and after my second child was born, my disease was never dormant again. In 1993, my wonderful doctor was perplexed - whatever I had looked halfway like aplastic anemia AND halfway like myelodysplastic syndrome, both of which were fatal in 1993. Through his attentive care, I was luckily stabilized for almost 25 years on danocrine. But in 2013, my disease progressed and I was diagnosed with severe aplastic anemia. Thankfully in that time, treatments and even cures had been developed. After an unsuccessful 6-month ATG (horse) therapy combined with Eltrombopag clinical trial, a perfect 10-of-10 match was found and I had a successful bone marrow transplant. I now have healthy blood counts for the first time in my life!
It was scary to face this rare and unfamiliar disease. I had never known anyone who had experienced aplastic anemia or a bone marrow transplant. There weren’t friends I could ask about this, and my family and I were hungry for information.
AAMDSIF to the rescue! I found informational brochures about aplastic anemia as well as transplants. AAMDSIF’s website and printed literature were thankfully available and quickly became a main source of information for my family and me. And even in the medical field, this rare disease is not well known or diagnosed as early as it could be, which can possibly affect treatment options.
I am so grateful to be alive and to have this “second chance” and I am eager to use my time to make a difference. That’s why I am privileged to volunteer for the March for Marrow committee. My goal is for future patients and families to have hope and find the support they need through the resources provided by this wonderful foundation.
Picture above is of my precious donor and me the day we met!