There can be lifelong challenges for people with sickle cell disease in rural Uganda, where it remains poorly understood. Estimates vary, but some researchers put the number of people with the disease in sub-Saharan Africa at more than 5 million. The only cure for the pain it can cause is a bone marrow transplant or gene therapy.
Barbara Nabulo cleans clothes at her home in Busamaga-Mutukula village in Mbale, Uganda , Thursday, April 25, 2024. There can be lifelong challenges for people with sickle cell disease in rural Uganda , where it remains poorly understood. Julian Abeso walks around sickle cell patients ward at the Mbale Regional Referral Hospital in Mbale, Uganda , Wednesday, April 24, 2024. There can be lifelong challenges for people with sickle cell disease in rural Uganda , where it remains poorly understood.
The disease, which can stunt physical growth, is more common in malaria-prone regions, notably Africa and India, because carrying the sickle cell trait helps protect against severe malaria. Global estimates of how many people have the disease vary, but some researchers put the number between 6 million and 8 million, with more than 5 million living in sub-Saharan Africa.by the U.S. Food and Drug Administration in December. A 12-year-old boy last week became the first person to begin the therapy.
Nabulo, now 37, is one of the hospital’s patients. But she approaches others like her as a caregiver, too. Such a message gives hope to those who feel discouraged or worry that sickle cell disease is a death sentence, said Dr. Julian Abeso, head of pediatrics at Mbale Regional Referral Hospital. Abeso and Nabulo grew close after Nabulo lost her first baby hours after childbirth in 2015. She cried in the doctor’s office as she spoke of her wish “to have a relative I can call mine, a descendant who can help me,” Abeso recalled.
Speaking outside the one-room home she shares with her husband and children, Nabulo said many people appreciate her work despite the countless indignities she faces, including unwanted stares from people in the streets who point to the woman with “a big head,” one manifestation in her of the disease. Her brothers often behave as if they are ashamed of her, she said.
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