Nalufenya Children’s Hospital in Jinja City has reported a steady rise in sickle cell disease cases, with health workers now managing about 800 patients every month at its dedicated clinic.
According to Dr. James Kitonsa, a paediatrician at the facility, the number of monthly visits has increased from around 760 in 2024 to approximately 800 this year, reflecting a growing burden of sickle cell disease (SCD) in the region.
Dr. Kitonsa noted that a significant number of the patients present with severe sickle cell anaemia, often requiring urgent blood transfusions and intensive medical care to prevent complications and deaths, particularly among young children.
He attributed the relatively improved survival rates among patients who return regularly for care to the commitment of health workers stationed at the hospital. However, he cautioned that many children are still being admitted multiple times within a single month, largely due to inadequate care practices and limited disease management knowledge at home.
“Some of these children are admitted up to three times in a month because home-based care is not well understood or consistently applied,” he explained.
Despite the efforts by medical teams, Dr. Kitonsa revealed that the hospital still records an average of six deaths per month, mainly linked to delayed access to hydroxyurea—a critical drug used in managing sickle cell disease and reducing complications.
The shortage and inconsistent access to essential medicines continue to pose a major challenge in treatment outcomes, he added.
Parents Speak Out on Treatment Struggles
For many families, the burden of managing sickle cell disease remains overwhelming. One such parent, Zubeda Kalikwani from Kamuli District, shared her painful experience of caring for multiple children living with the condition.
Kalikwani, who has been attending to her sick children for several years, said she lost one of her sons in 2024 after a sudden and severe attack that occurred at night.
She explained that financial constraints had interrupted her ability to consistently purchase hydroxyurea for nearly two weeks prior to the tragedy.
“My son developed a severe crisis around 9:40pm. By the time help arrived to take us to Kamuli General Hospital, he had already passed away,” she said.
Kalikwani added that she currently has two other children living with sickle cell disease and lives in constant fear due to limited access to treatment.
“I struggle to afford medicines, and I worry every day that I may lose them as well,” she said.
She is now calling for improved availability of key drugs such as hydroxyurea, folic acid, and penicillin in all government health facilities, arguing that consistent access would help families better manage the condition and improve survival rates.
High Burden in Busoga Region
Health data continues to show that Busoga sub-region carries one of the heaviest sickle cell burdens in the country, with prevalence estimated at around 20%, and some districts reporting rates as high as 24–25%.
The Ministry of Health’s 2023 maternal and child health report estimates that about 20,000 children are born with sickle cell disease annually in Uganda, with approximately 5,000 of these cases coming from Busoga alone.
Experts attribute the high prevalence to a combination of factors, including frequent marriages between carriers of the sickle cell trait, limited premarital screening, and low awareness of genetic risk among couples.
Health practitioners also point to widespread knowledge gaps among parents, many of whom are unaware that sickle cell disease is among the leading causes of death in children under five in the region.
A report by the Busoga Health Forum indicates that nearly 92% of parents in the sub-region have never screened their children for sickle cell disease, with many also showing low willingness to undergo future testing.
Health officials warn that without improved awareness, expanded screening, and better access to essential medicines, the burden of sickle cell disease in the region is likely to continue rising.
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