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"Sickle Cell Disease is not only a medical issue- it is a societal challenge that requires collective responsibility."
Federal Ministry of Health and Social Welfare, Nigeria
What is sickle cell disease?
What is sickle cell disease?
Sickle Cell Disease is an inherited blood disorder. It affects the shape of red blood cells.
Normal red blood cells are round and flexible. They move easily through blood vessels, carrying oxygen to every part of the body.
In SCD, red blood cells become stiff and crescent-shaped like a sickle. They clump together and block blood flow. This causes severe pain, organ damage, and other health problems.
SCD is not contagious. It is inherited from both parents, who each carry a copy of the sickle cell gene
Sickle cell disease in nigeria
Sickle cell disease in nigeria
Nigeria has the highest burden of Sickle Cell Disease in the world
150,000
150,000
children are born with SCD in Nigeria every year
1 in 4
1 in 4
Nigerians carries the sickle cell trait (that is approximately 50 million people)
50–90%
50–90%
of children born with SCD in sub-Saharan Africa do not survive past age five
Recurrent pain crises, emotional distress, stigmatization, and financial burdens documented in qualitative study of Nigerian adults with SCD
Depression prevalence estimated at 29–35% among people with SCD
73% of caregivers lost income or financial benefits due to time spent caring for child with SCD
Acute chest syndrome, stroke, and avascular necrosis are well-documented complications
Priapism, leg ulcers, and vision problems are known SCD complications
SCD affects intergenerational family dynamics, with siblings often receiving less attention and marriages straine
Life with SCD
Life with SCD
For individuals living with Sickle Cell Disease, life includes recurrent pain crises that disrupt school, work, and daily activities
Many individuals face stigma. False beliefs about curses and ancestral sins remain common, leading to social exclusion and isolation
Depression and anxiety are common, worsened by the stress of frequent hospitalizations and the feeling of being misunderstood
For families, the burden is intergenerational. SCD is hereditary, so its impact stretches across generations
Do you or a loved one have SCD?
Do you or a loved one have SCD?
We are building a library of lived experiences and we want to hear from you.
What Causes Sickle Cell Disease?
What Causes Sickle Cell Disease?
Sickle Cell Disease is caused by a genetic change in the gene responsible for producing hemoglobin, the protein in red blood cells that carries oxygen throughout the body. This genetic change leads to the production of abnormal hemoglobin known as hemoglobin S . When a person inherits two copies of this changed gene, one from each parent, they develop SCD. This is why the condition runs in families.
When both parents carry the trait (genotype AS), there is a 25% chance in each pregnancy that their child will have SCD and a 50% chance the child will be a carrier like their parents .
The sickle cell gene has persisted in Nigeria and other parts of Africa because carrying one copy of the gene offers some protection against malaria. In malaria-endemic regions like Nigeria, the Hb AS genotype confers a survival advantage that has contributed to the persistence of the Hb S gene in the population .
Prior to global migration, the world sickle cell map and the world malaria map closely approximated each other .
history of scd in nigeria
history of scd in nigeria
For centuries, long before science could explain SCD, Nigerian communities developed their own explanations for the mysterious illness that caused children to suffer recurring pain, severe illness, and early death. Among the Igbo people, these children were called Ogbanje, believed to be revenge-driven spirits who engaged in repeated cycles of birth, death, and reincarnation. Similar beliefs existed among the Yoruba of South West Nigeria, where the child was called Abiku, meaning "born only to die". Children with SCD were described as akpa oya, "a bag of diseases".
A study of 100 children classified as malevolent ogbanje found that 70 of them had sickle cell disease, strongly supporting the conclusion that the symptomatology and early mortality experience attributed to these spiritual beliefs were in fact related to sickle cell. Families with high rates of infant and childhood mortality often had names with themes of death, illustrating their experienced sense of exasperation and apprehension.
The first medical description of sickle-shaped red blood cells was published in 1910 by James B. Herrick in the United States, documenting a 20-year-old dental student from the Caribbean. However, sickle cell disorder had been recognised much earlier in Africa, as far back as the 17th century, with Africans having their own names for the condition.
As medical understanding improved and treatments became available, more children with SCD survived past early childhood, gradually weakening the belief in reincarnation.
Yet, the stigma from those old beliefs still lingers in some communities, where children with sickle cell are still sometimes labeled as Abiku or Ogbanje. Experts have condemned such myths, stating that these children are not spirits but individuals born with a medical condition that can be managed with proper treatment and support.
With improved awareness, better access to information, and stronger community support, families living with SCD no longer have to face it alone. At Sicklesafe Care Foundation, we are working to improve awareness, expand access to information, build community, and promote screening and treatment uptake so that every Nigerian family has the tools they need. SCD is not a death sentence. With the right care, people with SCD can live full and meaningful lives.
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