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Sickle Cell Cure Brings Mix of Anxiety and Hope
Terry Jackson lives a life dominated by sickle cell disease. The genetic disorder, in which misshapen red cells become wedged in blood vessels, causes him daily bone pain and lower back pain and has sent him to the hospital for pain treatment and life threatening emergencies for five decades. He has frequent transfusions of fresh blood. The disease has directed his every choice. It led him to get a Ph.D. in genetics from Duke University because he became fascinated with the science behind it. It is central to his identity.
This year, Dr. Jackson and other people with sickle cell may have the option of finally living without the damage the disease causes. Two drug companies are seeking approval from the Food and Drug Administration for gene therapies that may provide what amounts to a cure. But the decision to take the medication — should it become available — it turns out, is not so simple.
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This platform is made possible through a partnership with the Sickle Cell Disease Association of America, Inc. (SCDAA) and its member organizations. SCDAA's mission is to advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.