The anemia may present in infancy, in childhood, or occasionally in adulthood. For some patients a genetic cause for DBA can be found but for others no known genetic mutation is known at this time. Some patients have little or no anemia after treatment with steroids, whereas others may need continuous red blood cell transfusions or steroid therapy for a long time, sometimes for life. Steroids may control DBA in many patients at first, but after some time, the steroids may not work as well anymore. Red cell transfusions have many possible negative side effects, such as iron overload. Iron overload can occur in the liver, heart, and endocrine organs which can cause more complicated health problems such as liver or heart failure, diabetes, thyroid issues, etc.
People with DBA can live long, healthy, active lives through good medical care and a healthy lifestyle. As long as their hemoglobin levels are high enough (hemoglobin is the substance in the red blood cells that supplies oxygen to all cells in the body), people with DBA can take part in all activities, usually without limitations.
FAQ’s about DBA:
Q: What is Diamond Blackfan Anemia?
A: Diamond Blackfan Anemia (or DBA) is a rare blood disorder in which the bone marrow does not produce enough red blood cells
Q: How many people have DBA?
A: There are about 25-35 new cases of DBA per year in the United States and Canada. There are only about 800 known people in the US and Canada that have DBA.
Q: Can Anyone have DBA? Who does it Affect?
A: DBA affects both boys and girls equally. It occurs in every ethnic group.
Q: Where did DBA get its name?
A: The anemia was named for Dr. Louis K. Diamond and Dr. Kenneth D. Blackfan, the first doctors to document cases of the disease in the 1930′s.
Q: Can other family members have DBA?
A: Yes, if you have DBA, there is up to a 50% chance that each of your children will also have DBA.