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Old Wed Feb 21, 2007, 02:43 PM
Ruth Cuadra Ruth Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 616
Welcome, Lianne.

You've come to the right place! It can be very scary to hear a diagnosis like aplastic anemia, but I think your best weapon against this unknown is information. If you haven't already done so, you should contact the Aplastic Anemia & MDS International Foundation (click on Diseases & Drugs, then on Educational Materials) and order their information packet about aplastic anemia. It will help you learn more about what your mother can expect and how to communicate with her doctors effectively.

You'll want to ask her doctor about the particulars of her blood counts. The red blood cell (hemoglobin) count, white cell count, and platelet count are the most important. Aplastic anemia can affect the counts differently in different patients, but it is most likely that her counts will be below normal in all three areas. Is she going to be receiving blood and/or platelet transfusions? If so, you want to be sure that she receives "irradiated" and "leukocyte-reduced" blood products. These are processes in which the blood is treated to remove antibodies that could cause a reaction when the patient receives the transfusion. In the case of aplastic anemia patients who might receive many transfusions during their treatment, it is important to limit their exposure to these antibodies so they don't become overly sensitive to blood products.

Aplastic anemia is generally thought to be an auto-immune disease. This means that, for some reason we don't fully understand, your mother's immune system is attacking her own bone marrow causing it to malfunction by not producing enough blood cells. The most common treatment is to suppress the immune system so that it will stop attacking the bone marrow and allow the bone marrow to regenerate. It is likely that your mother will be treated with a combination of immunosuppressing drugs: ATG (anti-thymocyte globulin), cyclosporine, and prednisone. ATG is administered intravenously in a hospital over a period of a couple of days. The patient requires careful monitoring but it is generally well tolerated.

It is also likely that your mother will need some help at home after ATG. I was treated with ATG in 1996 following my diagnosis with aplastic anemia and I remember that it was very hard to do the simplest chores because of the fatigue. I was not so much "sick" as just very tired and weak at the beginning.

Having someone who can go with her to doctor's appointments to help listen and interpret is also very important. There is a lot of jargon to understand and the worry/fear make it hard to listen carefully. You and your mother should not be afraid to ask the doctor to repeat information or give more explanations until you are sure you understand--and the doctor should be willing to do this.

Please don't hesitate to post your questions and concerns here. There are many members who collectively have more experience dealing with aplastic anemia that most doctors do--and we are very willing to help.

Regards,
Ruth Cuadra
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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