There can be lifelong challenges for people with sickle cell disease in rural Uganda, where it remains poorly understood
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.
Some men have been known to divorce their wives — or neglect them in search of new partners — when they learn that their children have sickle cell disease. Frequent community deaths from disease complications reinforce perceptions of it as a scourge. Nabulo and health workers urge openness and the testing of children for sickle cell as early as possible. Abeso and Nabulo grew close after Nabulo lost her first baby hours after childbirth in 2015.
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