Mbale, Uganda. Barbara Nabulo was one of three girls in her family. But when one of her sisters died, her mother lamented at her funeral because she only had one and a half daughters left.
Half was the sick Nabulo, who at the age of 12 understood the meaning of her mother.
“I hated myself so much,” Nabulo said recently, recalling the words that preceded a period of illness that left her hospitalized and feeding through a tube.
The scene highlights the lifelong challenges faced by some people with sickle cell anemia in rural Uganda, where the disease remains poorly understood. Even Nabulus, despite knowing how illness weakens the body, repeatedly spoke of the “germ I was born with.”
Sickle cell anemia is a group of inherited disorders in which normally round red blood cells become hard, sticky, and crescent-shaped. The misshapen cells obstruct blood flow, which can lead to infections, excruciating pain, organ damage, and other complications.
The disease, which can stunt physical growth, is more common in malaria-prone regions, especially Africa and India, because carrying the sickle cell trait helps protect against severe malaria. Global estimates of how many people suffer from the disease vary, but some researchers put the number between 6 and 8 million, of which more than 5 million live in sub-Saharan Africa.
The only cure for the pain that sickle cell anemia can cause is a bone marrow transplant or gene therapies like the one approved commercially by the U.S. Food and Drug Administration in December. Last week, a 12-year-old boy became the first person to start therapy.
Those options are out of reach for most patients in this East African nation where sickle cell anemia is not a public health priority despite the burden it places on communities. There is no national database of patients with sickle cell anemia. Funding for treatment usually comes from donor organizations.
In a mountainous area of eastern Uganda that is a hotspot for sickle cell anemia, the main referral hospital treats hundreds of patients who come from nearby villages to collect medicines. Many are given doses of hydroxyurea, a drug that can reduce periods of severe pain and other complications, and researchers are studying its effectiveness in Ugandan children.
Nabulo, now 37 years old, is one of the hospital’s patients. But he also reaches out to other people like her as caregivers.
After dropping out of primary school, in recent years she has become a counselor for other patients, talking to them about their survival. Encouraged by hospital authorities, she makes weekly visits to the ward where there are many children watched by exhausted-looking parents.
Nabulo tells them that she was diagnosed with sickle cell anemia when she was two weeks old, but is now a mother of three children, including twins.
Such a message gives hope to those who feel discouraged or fear that sickle cell anemia is a death sentence, said Dr Julian Abeso, head of pediatrics at Mbale Regional Referral Hospital.
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 due to disease complications reinforce the perception that this is a scourge.
Nabulo and health workers urge opening up and testing children for sickle cell anemia as soon as possible.
Abeso and Nabulo became close after Nabulo lost her first baby hours after giving birth in 2015. She cried in the doctor’s office as she spoke of her wish to “have a relative that I can call my own, a descendant who can help me.” ”Abeso recalled.
“At that time, people here were very negative about sickle cell patients having children because the complications would be many,” the doctor said.
Nabulo’s second attempt to have a child was difficult and she spent some time in intensive care. But her baby is now a 7-year-old boy who sometimes accompanies her to the hospital. The twins came last year.
Speaking outside the one-room house she shares with her husband and children, Nabulo said many people appreciate her work despite the countless indignities she faces, including unwanted glances from people on the streets who point at the woman with ” a big head”, a manifestation of the disease in it. Her brothers often act as if they are ashamed of her, she said.
Once, she heard from a girl in her neighborhood whose grandmother frequently went to the clinic for an undiagnosed illness in the girl. The grandmother was hesitant to test the girl for sickle cell anemia when Nabulo first asked her to. But tests later revealed the disease and the girl is now receiving treatment.
“I am going to Nabulo for help because I cannot control the illness affecting my grandson,” said Kelemesiya Musuya. “She can feel pain and she starts crying, saying, ‘She’s here and she’s coming up and it hurts here and here.'”
Musuya sometimes seeks peace of mind. “She asked me: ‘Even for you, when you’re sick, do you have pain in your legs, in your chest, in your head?’ I tell him yes, it is that painful,” Nabulo said.
Nabulo said she was glad the girl, who is 11, is still going to school.
The lack of formal education is detrimental to Nabulo, who struggles to write her name, and a source of shame to her parents, who repeatedly apologize for letting her drop out while her siblings studied. One brother is now a medical worker who runs a clinic in a village not far from Nabulo’s house.
“I’m very happy to see her,” said her mother, Agatha Nambuya.
He recalled the swelling of Nabulo’s head and limbs as a baby, and how “these children used to die so soon.”
But now she knows of other people with sickle cell anemia who grew up to become doctors or whatever they wanted to be. She expressed her pride in Nabulo’s work as a counselor and said that her grandchildren make her feel happy.
“At that time,” he said, remembering Nabulo as a child, “we didn’t know.”
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