Dear Doctor: I have aplastic anemia. It is hard to explain this to people. Most of them hear the anemia part and get stuck there. I hear often: "Just take some iron" or, "My aunt had that and was cured with B12 shots." How do I quickly explain it better?
Dear Reader: How frustrating this must be for you. To put it simply for people, you could say that aplastic anemia is a bone marrow disease that leads to bone marrow failure. If they stare at you glassy-eyed, you might want to leave it at that, but if they're truly interested, you can try a longer explanation.
Start by saying that aplastic anemia is a rare disorder, diagnosed in one in every 500,000 people per year. The incidence is two to three times higher in Asia. Then you can explain that the function of the bone marrow is to produce red blood cells, white blood cells and clotting cells called platelets. The bone marrow contains specific cells, called hematopoietic stem cells, that are necessary to produce all of these. With aplastic anemia, these stem cells are damaged, so all of the cell lines are diminished.
Most cases of aplastic anemia are due to an attack by the body's immune system on the bone marrow, which destroys the hematopoietic stem cells. The cause of this attack is unknown, but a virus, chemical, drug or mutation may be the instigator, altering the immunity so that the white blood cells see the stem cells as foreign and thus attack them.
As the name implies, the disease causes anemia, which is a lowering of the red blood cell count. This can lead to significant fatigue and stress on the heart, which has to pump this deficient blood to the rest of the body. In addition, depletion of the white blood cells leads to an increased risk of pneumonia, urinary tract infections and severe bloodstream infections. When the white blood cell counts are chronically low, patients face a risk of invasive fungal infections, which can lead to death. Further, the lowering of the platelet counts increases the risk of bleeding due to the blood's decreased clotting ability. Ultimately, mutations in the bone marrow can lead to leukemia.
Aplastic anemia treatment depends upon the severity of the disease, the patient's age and whether the patient has other illnesses. You might want to explain that, because of the disease's potential complications, treatment is much more aggressive than taking iron or B12 supplements.
In fact, the treatment with the greatest chance of success is the transplantation of hematopoietic stem cells from a donor -- a difficult treatment with severe side effects. And although transplantation can lead to prolonged survival, it also often fails. This approach, which requires a compatible donor, is recommended for healthier patients and those younger than 50. Another method of treatment is the suppression of the immune system's attack on the cells in the bone marrow. This requires a combination of medications, which can also have significant side effects.
Maybe this explanation will help people understand the severity of aplastic anemia and to be more understanding of what you are going through. If not, at least be assured that some people do understand your battle -- and wish you strength and recovery.