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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.
“You can’t escape it,” said Dr. Jackson, who owns a science communication business. “It is life-changing. It is each breath you take.”
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.
“I ask myself, ‘Who am I without sickle cell?’” Dr. Jackson said, adding, “it’s hard to even imagine what I would do, what would I be, if I don’t have it any more.”
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...