Prof. Obiageli E. Nnodu, Principal Investigator and Director of the Centre of Excellence for Sickle Cell Disease Research and Training, speaking during the 2026 World Sickle Cell Day commemoration in Abuja on Thursday, where she raised concerns over late diagnosis of sickle cell disease among Nigerian children.

|By Prosper Okoye

Delayed diagnosis of sickle cell disease is contributing significantly to preventable deaths among children in Nigeria, a leading researcher, Prof Obiageli E. Nnodu, has said.

Prof Nnodu, Principal Investigator and Director of the Centre of Excellence for Sickle Cell Disease Research and Training (CESRTA), made the remarks on Thursday at the 2026 World Sickle Cell Day commemoration in Abuja.

She said many parents fail to present their children for early screening, often only seeking medical attention when complications have already become severe.

“They come when the child has become ill. This has more damaging effects on the child,” she said.

Nigeria has the highest burden of sickle cell disease globally, with more than 150,000 babies born with the condition annually, according to data from the centre.

Prof Nnodu warned that up to 50 per cent of affected children in Nigeria die before the age of five without diagnosis or treatment, despite the availability of early detection and intervention services that could significantly reduce mortality.

She attributed the delay in screening to fear, stigma, and poor awareness, noting that some parents wrongly believe that children diagnosed with sickle cell disease cannot survive to lead productive lives.

To address these concerns, the centre has introduced mentorship and support initiatives that connect older patients living with the condition—often referred to as “warriors”—with younger patients and their families.

“We have made deliberate efforts to bring older warriors and parents of younger warriors together so that they can see the potentials in the older warriors, so that they can see their achievements, and be better motivated to look after their own children,” she said.

The centre also disclosed that it has screened more than 35,000 newborns across 25 primary healthcare centres in the Federal Capital Territory under the Consortium on Newborn Screening in Africa (CONSA) programme. More than 400 babies diagnosed with sickle cell disease have since been enrolled in follow-up care and early intervention services.

Prof Nnodu called on the Federal Government to increase investment in research and treatment of sickle cell disease, including wider access to hydroxyurea, a key medication used in managing the condition.

Established in 2015, CESRTA conducts research, clinical training, and policy-focused interventions on sickle cell disease in collaboration with partners across Africa, Europe, and the United States. The centre also maintains a national patient registry of more than 10,000 people living with the condition.

Speaking at the event, Mr Light Obi Ogbonnia of the Obi Ogbonnia Sickle Cell Foundation said this year’s theme, “Speaking with One Voice,” reflects growing unity among advocacy groups working in the sector.

He said organisations that previously operated independently are now collaborating more closely to strengthen care and support for patients across the country.

Mr Ogbonnia, who has lived with sickle cell disease for 52 years, urged patients to remain hopeful and reject stigma, stressing that the condition is not a death sentence.

“The reason some of us joined this advocacy space is to show the world that sickle cell is not a death sentence,” he said.