A rural Ugandan community is a hot spot for sickle cell disease. But one patient gives hope

MBALE, Uganda (AP) — Barbara Nabulo was one of three girls in her family. But when a sister died, her mother wailed at the funeral that she was left with just one and a half daughters.

The half was the ailing Nabulo, who at age 12 grasped her mother’s meaning.

“I hated myself so much,” Nabulo said recently, recalling the words that preceded a period of sickness that left her hospitalized and feeding through a tube.

The scene underscores the lifelong challenges for some people with sickle cell disease in rural Uganda, where it remains poorly understood. Even Nabulo, despite her knowledge of how the disease weakens the body, spoke repeatedly of “the germ I was born with.”

Sickle cell disease is a group of inherited disorders in which red blood cells — normally round — become hard, sticky and crescent shaped. The misshapen cells clog the flow of blood, which can lead to infections, excruciating pain, organ damage and other complications.

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