Prosper Okoye
Delayed diagnosis of sickle cell disease is contributing to preventable deaths among Nigerian children, researcher Prof. Obiageli E. Nnodu said in Abuja.
Nnodu, Principal Investigator and Director of the Centre of Excellence for Sickle Cell Disease Research and Training (CESRTA), spoke during the 2026 World Sickle Cell Day commemoration at the Federal Capital Territory.
She said many Nigerian parents fail 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 bears 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 living with sickle cell disease in Nigeria die before the age of five due to lack of diagnosis or treatment, despite the fact that early detection and intervention could prevent many of the deaths.
She attributed delayed screening partly to fear, stigma, and poor awareness about the disease.
The medical expert noted that many parents wrongly assume that children diagnosed with sickle cell disease cannot survive long enough to live productive lives.
Addressing the fears
To address such fears, the centre has introduced mentorship and support programmes that bring together older sickle cell patients — often referred to as “warriors” — with 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 potential in the older warriors, witness their achievements, and become more motivated to care for their own children,” she said.
The centre disclosed that it has screened more than 35,000 newborns for sickle cell disease across 25 primary healthcare centres in the FCT 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 treatment of sickle cell disease, including wider access to hydroxyurea, a drug commonly used in managing the condition.
Essence of CESRTA
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 containing records of more than 10,000 sickle cell patients across Nigeria.
The World Sickle Cell Day commemoration was organised in collaboration with the Obi Ogbonnia Sickle Cell Foundation and other partners.
In a remark, Light Obi Ogbonnia said this year’s theme, “Speaking with One Voice,” reflected growing collaboration among civil society groups and stakeholders in the sickle cell advocacy space.
He noted that organisations working on sickle cell care had previously operated in a fragmented manner but were increasingly uniting to improve support for patients across Nigeria.
Ogbonnia encouraged people living with sickle cell disease to believe in their ability to live fulfilled and successful lives.
He cited his personal experience of living with the condition 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.
