The Fight of Silent Heroes: Sickle Cell Awareness and the Nigerian Society

By Abiola Anthonia Adebayo

 Imagine living in a world where your own blood turns against you. This is the reality for millions of people with sickle cell disease. Across Nigeria, countless families have experienced stories of loss not born out of old age but as a result of sickle cell.

For 19-year-old Agbelusi Anjolaoluwa Teniola, living with sickle cell disease is a reality she has known since childhood. Diagnosed with the inherited blood disorder at an early age, she describes a life shaped by resilience, self-care, and the unwavering support of family and healthcare professionals. Yet beyond the hospital visits and medications lies a burden many people never see.

“The most difficult part of living with sickle cell disease that many people do not see is the invisible burden that it carries,” she says. “This minute we are alright, and the next we are being rushed down to the hospital.”

Sickle cell is a type of blood or haemoglobin disorder where the red blood cells lack a particular haemoglobin, a protein for red blood cells. It is genetic-based and due to inheritance of mutated genes from parents. In the case of sickle cell, the red blood cells are literally sickled or deformed, which causes a block in blood flow that prevents oxygen from getting to the vital tissues and parts of the body.

In a 2024 report by the World Health Organization (WHO), approximately 5% of the world’s population carries trait genes for hemoglobin disorders, mainly sickle cell disease, and over 300,000 babies who are carriers of haemoglobin disorders are born annually. Sickle cell is a disease under the haemoglobin disorder that is predominant in India and Africa.

According to the American Society of Hematology in 2023, the life expectancy of patients living with sickle cell disease is placed at an average of 52.6 years, while the life expectancy for sickle cell patients was shortened by two decades, indicating an individual with sickle cell disease has 20 years less than the average non-sickle cell patient. This huge difference shows the struggles and difficulties faced by patients living with sickle cell disease.

Symptoms and Treatments of SCD

 As a result of these patients’ deformed blood cells, sickle cell patients all around the world experience varying symptoms. Some of which may be more severe than others, but all suffer from symptoms ranging from, but not limited to: pain in the bones, joints, and chest pale skin, jaundice; dizziness, fatigue, low oxygen in the body, malaise, shortness of breath and being highly prone to getting infections. Every sickle cell individual experiences episodes called sickle cell crisis; it is a situation where sickle cell individuals go through painful experiences. With a sickle cell crisis, pain might feel dull, intense, throbbing, or stabbing. It can last a few hours or, in some cases, several days or weeks. Pain can occur anywhere in the body and in one or more areas at a time. However, sickle cell crisis can be substantially reduced when a carrier avoids smoking, dresses warmly in cold environments, limits alcohol intake, stays hydrated, takes folic acid to boost red blood cell production, and also practices regular washing of hands to reduce the risk of infections, as sickle cell individuals are highly vulnerable to infections. The magnitude of struggles faced by so many of these patients cannot be properly put into words, as the degree of pain varies in individuals. Teniola explains that beyond the physical pain is the constant uncertainty that accompanies every day. According to her, people living with SCD often continue studying, working or caring for their families while enduring severe pain because the illness is largely invisible. She also recounts living with chronic fatigue caused by persistent anaemia, making everyday activities such as climbing stairs, concentrating or staying awake throughout the day far more exhausting than many people realise

Sickle cell in most parts of the world is mainly managed through medications and blood transfusion and is not curable except through one type of treatment. Although there have been technological advancements and cutting-edge discoveries made in the health space, the latest discoveries show that the only cure for SCD is a stem cell or a bone marrow transplant. Whereas this is a light in the tunnel for many patients who suffer from sickle cell disease, it is still not enough, as these procedures have been linked to procedural complexities and significant risks attached, therefore making it less achievable for many who may wish to go through this process. While treatment remains essential, Dr Noimat Balogun, a health communication researcher, suggests that genotype screening should become as routine as HIV and hepatitis testing before marriage. She believes that informed decisions made before marriage are one of the most effective methods of reducing the number of children born with sickle cell.

Teniola’s experience further highlights why these conversations are necessary. She notes that beyond the health implications, sickle cell also affects personal relationships, illustrating how genotype compatibility has become an increasingly important consideration among many young Nigerians.

The Troubling Increase of Sickle Cell Disease in Nigeria

Nigeria, as of today, stands as the highest burden of individuals living with sickle cell disease. With the rising population of Africa’s giant, the nation has a population of over 223.8 million, contributing largely to the rise in sickle cell disease, where a staggering amount of about 2–3% of the population has the sickle cell carrier trait, and over 50 million people have been diagnosed with carrying sickle cell traits. With the massive birth rate of Nigeria. Records gathered in 2022 put the birth rate of Nigeria at about 36.61 births per 1000 people, and this has allowed for the large figures to remain.

It is likewise the same in infants, where around 150,000 newborns are affected each year, and nearly half die before their fifth birthday. In Nigeria, researchers carried out research to find out the geographic concentration of sickle cell disease, and conclusions made from the research showed that sickle cell disease is prevalent in rural and underdeveloped areas such as villages and that, by region, the southwestern region of the country (Osun, Oyo, Ogun, Ekiti, Ondo, and Kwara) has more cases of this disease. Another strong factor that has led to an increase in sickle cell disease in Nigeria is what is generally termed socio-religious factors. Many Nigerians believe that certain things cannot happen to them, and in the Nigerian parlance, phrases like ‘it’s not my portion’ and ‘God forbid’, and the mentality of ‘when we reach that bridge, we will cross it’ have further increased the cases of sickle cell disease, as many individuals often believe that faith cures or prevents everything without taking necessary practical actions to stop this disease from spreading.

In Nigerian society, compared to the life expectancy stated by the American Society of Haematology for high-income countries, the life expectancy of sickle cell patients in Nigeria is fixed at 21 years, which is also 20 years less than that of sickle cell patients living in high-income nations like the US, the United Kingdom, Canada, and the rest of the developed world. Despite the increase in literacy level and technology in Nigeria, Nigerian society is still faced with increasing rates of sickle cell disease. This trend has become disadvantageous for both individuals affected by sickle cell disease and the economy at large.

The Dilemma Between Love, Choice and Genotype

 Furthermore, genotype compatibility has further increased difficult discussions in Nigerian society, where questions like ‘Should prenatal diagnosis influence reproductive decisions? Should couples who love each other abandon marriage because of genotype incompatibility? These questions remain deeply subjective, where ideologies are often shaped by religion, culture, morality, and individual beliefs.

In an interview with a medical expert, Dr Noimot Balogun, rather than prescribing one answer, emphasised that although there is a divide between those who prioritize reproductive choice and those whose beliefs oppose pregnancy termination, she argues that there should be greater public enlightenment and engagement, especially among young Nigerians.

She is, however, careful to distinguish public health advocacy from clinical expertise and stresses that treatment should always come from haematologists who specialise in blood disorders. Now, the bigger question begs itself: “What is the way forward?”

Steps Towards Change

 As a popular saying goes, “Prevention is better than cure.” This is the case when talking about and addressing issues concerning the high rate of sickle cell disease in Nigeria. The sickle cell awareness drive in Nigeria seems to be declining, as many schools no longer raise awareness on what sickle cell is; various organizations that are usually known for their health activism, especially on sickle cell, are no longer motivated to create awareness, and this has ultimately resulted in a lack of information to the populace on the issue of sickle cell.

In the case of Nigeria, where the order of the day includes financial crisis, economic recession, low standard of living as juxtaposed to the high cost of living, inflation, poor policies concerning health issues, maladministration and mismanagement of public funds and poor healthcare system, the citizenry, who make up a higher amount of the country, are therefore charged with the daunting responsibility to prevent the further increase of sickle cell, where sensitization methods are done through campaigns, rallies, awareness and educational programmes telling the public – young and old – of the dangers and financial stress that comes with birthing and, in the long term, raising of sickle cell children. Teniola also calls for improved healthcare support for people living with SCD. She believes emergency services dedicated to sickle cell patients, affordable medications, accessible ambulances and better-trained healthcare workers would significantly improve the quality of life of many warriors. Reflecting on her experience since relocating to the United Kingdom, she says, “I feel safe and supported because I have access to emergency care, treatments, medication and regular vaccinations. I do not have to wait at the hospital reception in excruciating pain just because I want to see a doctor.”

While there have been measures in treating sickle cell disease, stakeholders across levels should come together by making affordable health insurance available for people living with sickle cell disease, rendering financial assistance as well as sensitizing the public. Acknowledging the burden of SCD is a starting point, but much more needs to be put in place. Complementary efforts geared towards awareness, advocacy and research need to be made in an iterative manner in pursuit of significant improvement in SCD indices and outcomes in Nigeria. Her story serves as a reminder that behind every statistic is a life constantly negotiating pain, hope and resilience. While policies, awareness campaigns and genotype screening remain essential, the voices of people living with sickle cell continue to reveal the everyday realities that numbers alone cannot capture.

Furthermore, the Nigerian government should create partnerships and agreements with health and social justice organisations like the United Nations, the World Health Organization (WHO), and UNICEF, and also with NGOs for the purpose of idea, technological and financial exchange.

The key to drastically reducing the rate at which Nigeria battles sickle cell disease is not far-fetched. It lies with a government that is people-conscious and transparent and with every passionate, concerned, and well-meaning Nigerian citizen that is not only eager to listen and make the right choice but also take practical actions for the betterment of themselves, the economy, and, most importantly, Nigerian society.