Diamond Blackfan Anemia 101

I thought I would share the basics of Diamond Blackfan Anemia to help people better understand this rare and unique disorder. Diamond Blackfan Anemia (DBA) is a bone marrow failure disorder that inhibits red blood cell production. Finn does not have the ability to produce red blood cells on his own so he depends on blood transfusions every 2-3 weeks to survive. After a blood transfusion, Finn's hemoglobin rises to a normal level and immediately begins to slowly drop until his next blood transfusion. The low hemoglobin affects his energy level, pallor and overall health.

Finn continues to do well on transfusions, but is dealing with severe iron overload as a result of receiving over 50 transfusions and counting. Iron overload can be dangerous if not treated because excess iron primarily builds up in the liver and heart and can cause serious liver and cardiac problems. Because the body does not expel excess iron on its own, chelation therapy is required to help Finn rid his body of excess iron. Every night while Finn sleeps, he receives desferal (chelating agent) through a subcutaneous needle connected to an infusion pump. He seems to be responding to the nightly infusions as we just learned that his ferritin (iron indicator) levels significantly dropped for the first time in over a year. To learn more about DBA, please check out the DBA Foundation online. (There is a baby picture of Finn on the "For Families" page.)