If I take pain medication, I can’t do my work. I try to rest more, I stay in my room and I don’t walk around campus. “Whenever I feel a crisis coming on, I increase my fluids,” he said. Stress and too much exertion can trigger his pain crises. He monitors his exertions and his activity levels. If he takes too much, the drugs can make him feel dopey and less sharp. Haywood, a bioethicist at the Johns Hopkins Medical School, has to carefully consider how much pain medication to take. (Transfusions of healthy red blood cells help prevent anemia in patients with sickle cell disease.) He continues to take the drug, even though it is no longer as effective, but he has added a cocktail of daily pain medication and drugs to counter an iron overload caused by monthly blood transfusions. I attribute that to my responses to hydroxyurea.” In college, “I was able to manage my pain crises in my dorm room. Before that, one of his main memories from high school is “being in and out of hospital,” he said.
From about 1995 to 2000, Haywood was hospitalized only once. He has taken it since he was a freshman at the University of Virginia. Hemoglobin helps the blood transport oxygen.Ĭarlton Haywood, 37, who was given a sickle cell diagnosis at age 3, knows the benefits and the shortcomings of hydroxyurea. Fetal hemoglobin continues to be produced well into the first year of a baby’s life and then switches to adult hemoglobin in most cases.
S tudies have found that higher levels of that blood component are associated with milder forms of sickle cell disease. While scientists do not know exactly how it works, hydroxyurea boosts the body’s production of fetal hemoglobin. The Food and Drug Administration approved using the drug in 1998 to help reduce the number of pain crises experienced by adult sickle cell patients. But researchers say that today many people with the disease can live far longer due to early treatment with antibiotics, better pain management and especially the use of hydroxyurea. These mutated cells do not flow smoothly and can get lodged in veins, causing excruciating pain, anemia, severe fatigue, respiratory distress and eventually organ failure and early death.Ī 1973 study put the average life expectancy after diagnosis, which usually occurred in childhood, at around 14 years. The syndrome causes normal, oval-shaped red blood cells to lose oxygen and collapse into sickle shapes. For the disease to emerge, it must be passed down by both parents. Sickle cell disease is one of the most common inherited blood disorders, mostly found in people of African, Hispanic, Mediterranean and Middle Eastern descent and affecting about 100,000 Americans. It is a combination of basic science and clinical investigators who are persistent.” “You can get leaps, but most of the time it’s dog’s work. “I don’t like to use the word ‘breakthrough.’ We are making progress,” said David Nathan, a hematologist and president emeritus of the Dana-Farber Cancer Institute in Boston, who has been studying sickle cell disease for more than 50 years.
New research and better and more aggressive treatment have begun to change sickle cell disease from an inherited condition that often condemned children to painful and short lives into a condition that can be managed with less pain and has a better life expectancy.
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