Long before science explained the mysteries of genetics, many Nigerian communities sought answers in folklore.
Among the Yoruba, children who died repeatedly in infancy were believed to be Abiku, spirits doomed to return to the world only to die again. Among the Igbo, they were known as Ogbanje, children trapped in a cycle of birth and death that brought endless grief to their families.
Today, medicine has demystified what generations once struggled to understand. Yet despite advances in healthcare, sickle cell disease (SCD) remains one of Nigeria’s most devastating and overlooked public health challenges.
However, there are warnings that nearly half of children born with sickle cell disease in Nigeria may never live to celebrate their fifth birthday, largely because of delayed diagnosis and the absence of routine newborn screening.
The crisis is unfolding in a country that carries one of the world’s highest burdens of the inherited blood disorder. An estimated 40 million Nigerians, between 21 and 25 per cent of the population, are healthy carriers of the sickle cell trait, possessing AS, AC or SC genotypes. While carriers generally live normal lives, they can unknowingly pass the defective gene to their children.
June 19, designated by the United Nations since 2008 as World Sickle Cell Day, serves as a reminder that the disease is not merely a medical issue but a global public health concern. This year’s theme, “Closing the Survival Gap: Equity in Sickle Cell Disease,” highlights the urgent need to bridge inequalities in diagnosis, treatment and access to quality care.
For Professor Aisha Kuliya-Gwarzo, Clinical Director of Haematology at the African Medical Centre of Excellence in Abuja, one fact stands out above all others: sickle cell disease is entirely preventable.
“Sickle cell is 100 per cent preventable through informed reproductive choices,” she said.
Yet, despite this reality, Nigeria continues to record thousands of births affected by the condition each year. According to Kuliya-Gwarzo, several factors are responsible for the persistent burden, including limited access to reliable genotype testing, inadequate premarital genetic counselling, low awareness and cultural or religious beliefs that sometimes override medical advice.
One of the greatest misconceptions surrounding the disease, experts say, is the failure to distinguish between sickle cell trait and sickle cell disease. Individuals with one abnormal gene are merely carriers and are usually healthy, while those who inherit two defective genes face a lifetime of complications ranging from severe pain crises and infections to organ damage and stroke.
The stakes become particularly high when both parents carry the sickle cell trait. In such cases, every pregnancy comes with a 25 per cent chance that the child will inherit sickle cell disease, a 50 per cent chance of being a carrier and only a 25 per cent chance of inheriting normal genes.
This, specialists argue, makes genetic counselling an indispensable part of healthcare rather than an optional exercise. Early screening and informed decisions can prevent untold suffering for future generations.
Sickle cell disease affects haemoglobin, the oxygen-carrying protein in red blood cells. Instead of maintaining their normal shape, the cells become rigid and crescent-shaped, restricting blood flow and causing chronic complications. Though there is no universal cure, early diagnosis and appropriate management have dramatically improved survival rates in countries with robust healthcare systems.
The contrast with Nigeria is stark. In many developed countries, newborn screening programmes ensure early intervention, allowing most children with the disease to survive into adulthood. In Nigeria, however, many cases go undetected until life-threatening complications emerge.
Health advocates say the country must urgently expand newborn screening, improve access to affordable genotype testing and strengthen public education to dispel myths surrounding the disease.
As Nigeria joins the rest of the world to mark World Sickle Cell Day, experts insist that the battle against the disease is no longer one of mystery but of awareness, access and informed choices.
The tragedy, they argue, is that while sickle cell disease cannot yet be cured for everyone, many of its consequences, and indeed many of the cases themselves are preventable. For millions of families, closing the survival gap could mean the difference between mourning another child and watching one grow into adulthood.
