"'You have Myelodysplastic Syndrome' was the diagnosis my Hematologist/Oncologist gave me on that day 5 years ago as my husband and I sat across from him at his desk. "I have Myelo-what?" was my bewildered reply having never heard of this strange sounding disease and because the only symptom I was experiencing was ongoing fatigue. Well, that was the beginning of my MDS journey which would include numerous red blood cell transfusions, an unsuccessful course of Revlimid and increasing complex chromosome abnormalities that would lead me down the path toward my best chance at survival, an unrelated bone marrow transplant.
"In the beginning I did what most newly diagnosed patients do, I scoured the internet wanting and needing to know absolutely everything about this "MDS anemia thing" and came upon some very scary statistics that left me feeling like I was the only patient with this disease and very frustrated by the lack of quality and timely information. Then I happened upon the AA&MDSIF website and found that I was not alone in this at all. I was so relieved to find such invaluable information on MDS (in so many different formats). I made it my mission to self-educate myself through the multitude of tools and resources available (especially the Online Learning Center). I have continually relied on the AA&MDSIF organization to help me make informed MDS treatment decisions and I was confident that a unrelated BMT would be my best option thru discussions with my doctors and by watching your webinars hosted by transplant experts on the subject. I am now 21 months post transplant, doing well and my husband and I consider it an honor to support the important work of the AA&MDSIF including providing educational resources, important research and strong patient advocacy. You have been a beacon of hope on my personal journey and I have always considered you a very important member of my healthcare team. Thank you for all you do and for being there when I needed help and support the most."