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Low awareness hampers sickle cell disease fight in Northern Uganda

28 October 2026, 3:03 pm

The MUTU Sickle Cell Initiative Uganda banner.

By Emmanuel Mwaka

A critical lack of awareness continues to hamper efforts to combat sickle cell disease in Northern Uganda, leaving communities vulnerable to dangerous myths and delayed diagnoses.

This concern emerged during an ongoing series of school-based sickle cell awareness campaigns led by the MUTU Sickle Cell Initiative Uganda, which has been engaging students in various schools across Gulu City and Gulu District.

Speaking about the importance of early education, Ms Acibo Fiona Mary, director of the MUTU Sickle Cell Initiative, stressed the need to educate young people about the disease as they grow up.

Ms Acibo Fiona Mary, director of the MUTU Sickle Cell Initiative Uganda, speaks about the need to raise awareness of sickle cell disease.
Ms Acibo Fiona Mary, director of the MUTU Sickle Cell Initiative, during a sickle cell awareness campaign at Gulu Prison Primary School on Wednesday, 28 October 2026.

Dr Okiror Daniel, an intern doctor and president of the Sickle Cell Disease Club in Gulu, shed light on alarming myths deeply rooted in local communities. He noted that many children grow up believing falsehoods, such as the claims that sickle cell disease can be contracted through sharing sharp objects or sexual intercourse, or that people living with the condition are beyond help and should simply be left to die.

Dr Okiror also clarified the realities of treatment in Uganda, noting that although traditional cures remain limited in the country, modern medical approaches such as gene therapy offer hope for the future.

Dr Daniel Okiror, an intern doctor and president of the Sickle Cell Disease Club in Gulu, speaks about myths and misconceptions surrounding sickle cell disease.

Mrs Ayang Ebila Ejang Joyce, deputy headteacher of Gulu Public Primary School, commended the MUTU Sickle Cell Initiative for bringing vital awareness activities directly into classrooms. She noted that while most learners are well-informed about HIV/AIDS, awareness of sickle cell disease has historically lagged behind.

Ms Ayang Ebila Ejang Joyce, deputy headteacher of Gulu Public Primary School, speaks about learners’ awareness of sickle cell disease.

At Gulu Prison Primary School, proactive management is already saving lives. Mr Odora Robert, the headteacher, said the school currently has five pupils living with sickle cell disease.

Mr Odora Robert, headteacher of Gulu Prison Primary School, speaks about pupils living with sickle cell disease.
MUTU Sickle Cell Initiative staff pose with pupils and staff of Gulu Prison Primary School on Wednesday, 28 October 2026, after a sickle cell awareness campaign.

An estimated 15,000 to 20,000 or more babies are born with sickle cell disease (SCD) in Uganda every year. Tragically, due to limited access to early diagnosis and specialised care, as well as poverty, approximately 70% to 80% of children born with SCD in Uganda die before their fifth birthday.