Myelodysplastic Syndromes, Acute Myeloid Leukemia, Adult

3/17/2009 11:10

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Last winter after Christmas my father seemed to have persistent colds and stomach problems. Naturally my mother was slightly concerned but not worried.  The stomach problems continued into spring and summer with increasing severity. Then one Sunday after lunch he collapsed with a high fever, the GP was called, and he was admitted to hospital. In hospital he was immediately isolated and given a huge dose of penicillin and had several blood tests which were inconclusive. My first reaction was to think he had MRSA or a very nasty viral infection that could be cured with drugs. He was meant to have a bone marrow biopsy but this was delayed, and he was sent home – or rather requested to be sent home – after three days. About a month later he returned for the bone marrow biopsy which was sent to a university hospital for a definitive diagnosis. At this time my parents were scared as many thoughts crossed their minds as to what was wrong with my father. One month after the biopsy and after they had cancelled their summer holiday in anticipation of the results, he was informed that he had myelodysplastic syndrome (MDS), a blood disorder that gradually affects the ability of a person's bone marrow to produce normal cells such as red blood cells, white blood cells and platelets. My parents were told that patients with MDS have a risk of the disease progressing to acute myelogenous leukemia and that there was no cure but he would be monitored every three months. Today my father is healthy and my parents put on a brave face, but they know that there is a risk that the disease could progress to acute myelogenous leukemia and there is no cure or treatment for that either. I wish that there was more support from the health service during the waiting period before a definitive diagnosis in cases of rare diseases, and I wish that there was more public and private research done into finding a cure for rare cancers such as myelodysplastic syndrome or treatment to prevent it from progressing to acute myelogenous leukemia, as in some ways my parents now live on hope between each three-month check-up. While there seems to be a great deal of research and development to find a cure for the common cancers, rare cancers appear neglected, though the pain and impact on people’s lives is the same.

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