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When Precious Lee was a year old, she began to experience severe pain in one of her arms. Her mother, Tammy, knew something was wrong—Precious had stopped eating and wasn’t moving her arm at all—but the doctors at their local hospital didn’t share her concern. “My mom brought me to the hospital multiple times, but they kept telling her that I had the cold or the flu,” says Precious, who is now in her thirties. “They didn’t know what was wrong with me, so they just kept sending me home.”
Realizing her daughter needed urgent help, Tammy drove from their home in Illinois to a children’s hospital in St. Louis, Missouri. Once there, Precious was diagnosed with sickle cell disease (SCD), an inherited blood cell disorder that inhibits blood flow, which deprives tissues of oxygen and can cause excruciating pain, stroke, and organ damage.
Now, over three decades later, Precious has spent her lifetime navigating the health system, first as a patient with SCD and then, after her son Melvin was born with SCD, as a mother. She has lived with the impact of SCD, witnessed significant advancements in care, and intimately knows the barriers families still face.
Below, she describes those challenges and elaborates on opportunities for continued improvement.
