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As Edward Donnell Ivy remembers it, many of the sickle cell episodes he endured in his 20s were akin to headaches or colds: They hurt, but he could still get up and go.
Every so often, though, he would be gripped by pain that left him unable to function. “I can’t go out the house. I can’t leave the bed,” he recalled. Then a college student, he would often wind up in the emergency room and miss weeks of classes at a time. The disease was taking a toll.
After years of struggling with his symptoms, Ivy found a medication that helped him manage the condition, and the worst episodes faded. He finished college and went on to complete medical school and earn a master’s degree in public health. He landed a job with the National Institutes of Health, where he helped the National Heart, Lung, and Blood Institute develop guidelines for sickle cell treatment.
Eventually, he contemplated having children of his own, which put him in a quandary: Would his kids inherit the condition that had caused him so much...