In June, Emma discovered bruising and small red spots on her arms and legs. A blood test revealed a low platelet count and the red spots were actually petechiae caused by ruptured capillaries under the skin. The platelet cells are responsible for clotting your blood, so with a low count she was bruising easily. Her platelet count was so low that she was immediately hospitalized and transfused with platelets. Three weeks, 16 days in or at the hospital, two bone marrow biopsies, and over 90 blood tests later, she was diagnosed with aplastic anemia of unknown origin (acquired vs inherited).
With no known siblings or bone marrow matches and declining stem cell activity, Emma agreed to undertake immunosuppressive treatment ASAP. Aplastic anemia is an autoimmune disorder where your own white blood cells are attacking your bone marrow stem cells. Immunosuppressive therapy uses cultured antibodies to destroy the rogue white cells and restore a friendly environment for the bone marrow stem cells so that they can rejuvenate and produce the blood cells needed by your body. It can be a lengthy treatment (12-18 months) but has a good track record for being effective and aplastic anemia patients can recover fully and lead normal lives with only occasional monitoring of your blood cell activity.
Often we want to know what caused it and the truth is that we just don’t know. In 90% of acquired aplastic anemia cases, the causal event or trigger is not identified. We do know that it is not caused by anything that Emma did or did not do. And we tested for all possible viruses, mono (Epstein-Barr virus) or tick bites that were suspect based on where Emma had recently traveled or made contact.
Aplastic anemia (AA) is quite rare, affecting only 2 to 4 people in a million. So we were pleasantly surprised to find out that we have a world renowned specialist right here in Wisconsin! Not only is he the leading authority for AA in the US, Dr. Margolis is very personable and dedicated to treating his patients. There are only two other centers in the US that handle AA patients – the National Institute of Health in Bethesda, MD and Johns Hopkins University in Baltimore, MD.
Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most.