Sickle cell: Lack of premarital screening blamed for rising cases in Acholi

ACHOLI - A red flag has been raised over the rising cases of sickle cell disease in Acholi region.

Out of 3,000 individuals screened for sickle cell disease in Acholi by St Mary’s Hospital Lacor, 25% were positive.

The revelations are contained in the hospital's 2023-2024 report. 

Sickle cell disease is an inherited condition affecting red blood cells. The most serious type, sickle cell anaemia, causes blood cells to change shape, live shorter lives and block blood vessels.

It is a lifelong condition with no cure yet, but early diagnosis and treatment can make a big difference.

Lacor Hospital head of paediatric department Dr Vince Omona attributes this growing burden partly to the lack of emphasis on premarital screening. 

He noted that the districts of Nwoya and Amuru have particularly high positivity rates, however, he suggests that other districts not covered by Lacor Hospital may also be experiencing significant issues with sickle cell disease.

Currently, Lacor is managing between 900 and 1,000 patients with sickle cell disease who are enrolled in their database.

Omona on July 1, 2025, expressed hope that ongoing research at Gulu University, aimed at developing an alternative treatment for sickle cell disease using herbal medicine, could lead to new treatment options.

He highlighted the socioeconomic challenges that many patients face, which complicate their access to conventional treatments.

Recent statistics from the health ministry indicate that the prevalence of sickle cell disease in the Acholi region is approximately 13.3%.

Alarmingly, around 33,000 infants are born with the condition each year, with 80% not surviving past their fifth birthday.

In response to these concerning figures, Gulu University has established a living gene bank to cultivate plants that may be used to develop potential remedies.

Lamwaka acknowledged that while herbal treatments are still in the research and development phase, some critically ill patients have begun to receive them in natural formulations.

“The good news is, the Government has provided most of the testing kits,” says Daniel Roy Odur, the executive director of the Catherine Phil Sickle Cell Support Initiative, a Ugandan organisation working to improve the lives of those with sickle cell disease.

For example, the Central Public Health Laboratory, which is the National Health Laboratory and Diagnostic Services in Uganda, operating under the health ministry, has supplied regional referral hospitals and some health centre IVs with sickle cell rapid diagnostic tests (RDTs), helping people know their status.

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Awareness key

Dr Anne Akullo, a paediatric haematologist at Mulago Hospital and president of the Uganda Paediatrics Association, says awareness is the first step in prevention.

“People need to understand that sickle cell disease is genetic. You get a gene from each parent. If you only have one gene, you are a carrier. You will not have symptoms, and you might never know until you have a child with another carrier,” Akullo says.

She emphasises the importance of pre-conception testing, not just pre-marital screening.

“Many couples already have children by the time they think about testing. Testing before pregnancy helps prevent passing on the disease unknowingly.”

For each pregnancy between two carriers, there is a 25% chance the child will have sickle cell disease. That does not mean one out of four children will have it; it means every single pregnancy carries that 25% risk.

A couple could have four children and all of them could inherit the disease. Or none might. It depends on which genes the child inherits. If both parents have sickle cell disease, all their children will inherit the disease.

If one parent has the disease and the other is a carrier, each child has a 50% chance of inheriting sickle cell disease and a 50% chance of being a carrier. In such cases, there is no chance of having a child free of the gene.

“The most important thing to remember,” says Akullo, “is that you need a gene from both parents to have the disease. And both parents might be carriers without ever knowing it.”

Sickle cell in Uganda

In Uganda, about 13% of people carry the sickle cell trait and nearly 1% live with the disease.

Some districts report rates as high as 25% for carriers and over 2% for sickle cell disease itself. Every year, approximately 15,000 babies are born with sickle cell disease in Uganda alone, many of whom may not get diagnosed early enough.

Reports show Alebtong district in Uganda has the highest prevalence of sickle cell disease, standing at 23%, compared to the national prevalence of 17%, whereas eight other districts in Uganda have a prevalence greater than 20%.

A continental problem

The disease is widespread in Africa, where the highest number of people carry the sickle cell trait.

In many countries like Cameroon, the DR Congo, Gabon, Ghana, Nigeria and Uganda, between 10% and 40% of the population are affected. Nigeria has the highest burden globally, followed by the DR Congo.