By Prosper Okoye
Delayed diagnosis of sickle cell disease is contributing to preventable deaths among Nigerian children, researcher Obiageli E. Nnodu said on Thursday.
Nnodu, principal investigator and director of the Centre of Excellence for Sickle Cell Disease Research and Training, spoke at the 2026 World Sickle Cell Day commemoration in Abuja.
She said many Nigerian parents refuse to present their children for early screening, often seeking medical help only after severe complications have developed.
“They come when the child has become ill. This has more damaging effects on the child,” Nnodu said.
Nigeria carries the world’s highest burden of sickle cell disease, with more than 150,000 babies born annually with the condition, according to the centre.
Nnodu said up to 50 percent of children with sickle cell disease in Nigeria die before the age of five without diagnosis or treatment, despite the fact that early detection and intervention could prevent many deaths.
She attributed delayed screening partly to fear, stigma and poor awareness about the disease, adding that many parents wrongly assume children diagnosed with sickle cell disease would not survive long enough to live productive lives.
To counter such fears, the centre has created mentorship and support programmes bringing together older sickle cell patients — often referred to as “warriors” — and parents of younger patients.
“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 said it had screened more than 35,000 newborns for sickle cell disease across 25 primary healthcare centres in the Federal Capital Territory under the Consortium on Newborn Screening in Africa (CONSA) programme.
According to the centre, more than 400 babies identified with the disease through the programme have been enrolled in follow-up care and early intervention services.
Nnodu also called on the Nigerian government to increase support for research and development of treatments for sickle cell disease, including wider access to hydroxyurea, a drug used in managing the condition.
Established in 2015, CESRTA conducts research, clinical training and policy-focused programmes on sickle cell disease in partnership with institutions across Africa, Europe and the United States.
The centre also manages a national patient registry with more than 10,000 sickle cell patients across Nigeria.
The World Sickle Cell commemoration event was held in collaboration with the Obi Ogbonnia Sickle Cell Foundation and other partners.
Speaking at the event, Light Obi Ogbonnia said this year’s theme, “Speaking with One Voice”, reflected growing collaboration among civil society groups and other actors in the sickle cell advocacy space.
He said organisations working on sickle cell care had previously operated in a fragmented manner but were increasingly coming together to improve support for patients in Nigeria.
Ogbonnia urged sickle cell patients to believe in their ability to live fulfilled lives, citing his own experience of living with the disease for 52 years while building a successful family and business life.
“The reason some of us joined this advocacy space is to show the world that sickle cell is not a death sentence,” he said.
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