As conversations around sickle cell disease continue this September, the focus in Nigeria is increasingly moving beyond genotype testing to a more difficult question: what does it actually mean to live with the disease?
For millions of people and their families, sickle cell is not simply a result written on a laboratory form. It can mean recurrent pain, hospital visits, medication, blood transfusions, interrupted education, lost income, stigma and the constant need to manage a lifelong condition.
But it can also mean something else: ambition, careers, relationships, creativity and the determination to live a full life despite the disease.
There are days when Imabong’s life looks ordinary.
She creates content, engages her audience, shares moments from her life online and works to build a career in the digital space.
Then there are days when her body reminds her that ordinary life cannot always be taken for granted.
Pain can interrupt plans. Medical appointments can replace commitments. Recovery can take longer than expected. A condition that many Nigerians encounter first through genotype testing can suddenly become the centre of everyday life.
For Imabong, however, sickle cell has not meant withdrawing from public life.
Instead, she has used her experience to talk about the realities of living with the disease, becoming part of a growing community of Nigerians using their voices to challenge misconceptions and stigma.
Her story captures an important shift in the sickle-cell conversation.
Knowing one’s genotype remains important. Understanding how sickle cell is inherited remains important. Genetic counselling remains important.
But awareness cannot end there.
It must also address what happens after diagnosis.
What does it mean to live with sickle cell in Nigeria? What happens when a crisis begins? Can patients consistently afford treatment? Is appropriate care available when it is needed? Do patients have access to specialist services, essential medicines and safe blood? How does the disease affect education, employment and family life?
And perhaps most importantly, can Nigerians living with sickle cell be allowed to live beyond the diagnosis?
THE MEDICAL REALITY BEHIND THE DIAGNOSIS
Sickle cell disease is an inherited blood disorder involving haemoglobin, the protein in red blood cells responsible for carrying oxygen around the body.
In people with sickle cell disease, abnormal haemoglobin can cause red blood cells to become rigid and sickle-shaped. These cells can obstruct blood flow, reducing oxygen delivery to tissues and organs and producing episodes of severe pain and other complications.
According to the World Health Organisation, sickle cell disease can cause anaemia, acute pain crises, stroke, infections, kidney complications and other serious health problems. WHO estimates that 7.74 million people were living with sickle cell disease globally in 2021, with sub-Saharan Africa accounting for nearly 80 per cent of cases.
The disease exists in different forms. Sickle cell anaemia, commonly associated with HbSS, is one of the most severe forms, while other combinations, including HbSC, can also cause sickle cell disease.
This distinction matters because genotype terminology can sometimes obscure the medical reality.
Sickle cell disease is not merely a laboratory result.
It is lived.
It is lived by the child who misses school during a crisis.
The university student who postpones an examination.
The worker who cannot report for duty.
The parent who spends the night beside a hospital bed.
The family searching for compatible blood.
The patient trying to explain pain that cannot be seen.
And the person who wakes up determined to live an ordinary life while knowing that a crisis can change the course of a day without warning.
THE PAIN PEOPLE CANNOT SEE
One of the most difficult aspects of sickle cell disease is the invisibility of much of its pain.
A patient can be experiencing severe pain while appearing physically well.
There may be no broken bone, visible wound or obvious injury.
To someone unfamiliar with sickle cell disease, the patient may look perfectly healthy.
For the person experiencing a vaso-occlusive pain crisis, however, the reality can be completely different.
That disconnect can create frustration and, in some cases, stigma, particularly when patients feel that their pain is questioned or underestimated.
Pain should not become a credibility test.
A patient should not have to look critically ill before their suffering is taken seriously.
But the responsibility does not rest entirely with individual healthcare workers. Nigeria’s healthcare system also faces significant challenges in delivering comprehensive sickle-cell care.
Research involving Nigerian healthcare facilities has identified gaps in access to comprehensive services, specialist care, newborn screening and disease-modifying treatment. More recent research has continued to identify disparities in the delivery of comprehensive sickle-cell care, particularly outside major urban and tertiary centres.
The result is that a patient’s experience can depend significantly on where they live, the facility they can access and their ability to pay.
WHEN THE HOSPITAL BECOMES PART OF LIFE
For someone living with sickle cell disease, the hospital is not necessarily a place visited only during an emergency.
It can become part of life.
It is where crises are treated, blood may be transfused, complications are investigated, medication is prescribed and specialists monitor the patient’s condition.
But repeated hospital visits can also expose the economic and structural challenges surrounding chronic disease management.
Medication costs money.
Investigations cost money.
Transportation costs money.
Specialist consultations cost money.
Hospital admission can mean lost income.
For a chronic condition requiring lifelong management, these pressures can accumulate over years.
Research on sickle-cell care in Nigeria has identified cost, availability of medicines and access to appropriate monitoring as important barriers to the use of hydroxyurea, an established disease-modifying treatment for sickle cell disease.
This means that the question is not simply whether Nigeria has doctors.
It is whether patients can obtain continuous, timely and affordable care before complications become emergencies.
THE FAMILY LIVES WITH IT TOO
Sickle cell disease may affect one person’s body, but its consequences often extend to an entire household.
Parents learn to recognise the signs of a crisis.
Siblings become familiar with hospital routines.
Partners learn medication schedules and warning signs.
Caregivers become experienced in navigating a healthcare system they never expected to know so intimately.
There is also fear.
The fear of another crisis.
The fear of complications.
The fear of a hospital bill.
The fear of receiving a phone call from school or work.
For families who have lost someone to the disease, that fear can eventually become grief.
This is the part of sickle cell disease that statistics cannot fully capture.
The emotional burden is often carried quietly.
THE COST OF BEING SICK
The economic consequences can be just as significant.
For parents, caring for a child during a crisis can mean missing work.
For young adults, repeated illness can affect education, attendance and employment.
For families already dealing with rising living costs, chronic illness can become financially destabilising.
The cost is therefore not limited to what appears on a hospital bill.
There is also the income lost, opportunities postponed, education interrupted, plans cancelled and emotional energy consumed by constantly managing illness.
A healthcare system that seeks to improve sickle-cell outcomes must therefore consider not only emergency treatment but also the financial barriers that prevent patients from maintaining regular care.
ADEKUNLE GOLD: WHEN PERSONAL EXPERIENCE BECOMES ADVOCACY
Nigerian singer Adekunle Gold has helped bring the lived experience of sickle cell disease into popular culture.
The musician has publicly spoken about living with sickle cell from childhood and the challenges associated with the condition.
His advocacy has subsequently moved beyond personal storytelling.
Through the Adekunle Gold Foundation, he has supported initiatives focused on awareness and access to healthcare for people living with sickle cell disease.
The foundation’s 5 Star Care initiative says it is providing 1,000 people living with sickle cell with free access to comprehensive health-insurance coverage, in partnership with the Lagos State Health Management Scheme, Sickle Cell Management Initiatives and the Lagos State Ministry of Health. The programme is designed to cover routine care, emergency treatment and long-term support.
The significance of such initiatives goes beyond celebrity visibility.
Awareness tells people that a problem exists.
Access to care gives people a means of managing it.
For a chronic condition, that distinction matters.
Adekunle Gold’s public journey also challenges the assumption that sickle cell should determine the limits of a person’s ambition.
He became a successful musician and has used his public platform to speak about a condition that has been part of his life since childhood.
Sickle cell remains part of his story.
It does not constitute the entirety of it.
LAYCON AND THE POWER OF REPRESENTATION
In 2020, Olamilekan Agbeleshe, popularly known as Laycon, won the fifth season of Big Brother Naija and subsequently built a career in Nigeria’s entertainment industry.
During his rise to public prominence, he also disclosed that he has the SC genotype.
For a young audience accustomed to seeing celebrities through carefully constructed public images, such disclosure brought sickle cell into an unexpected space.
Big Brother Naija was entertainment.
It was youth culture.
It was television.
Yet a health condition often discussed in the context of family planning and genotype compatibility suddenly had a recognisable face attached to it.
That kind of representation can matter.
Young Nigerians do not learn exclusively through classrooms, textbooks or hospital consultations. They also learn through music, television, social media and people they admire.
When public figures speak openly about sickle cell, they can help challenge the perception that the condition should be hidden.
The message is not that sickle cell is insignificant.
It is that a medical condition does not erase a person’s identity, ambition or potential.
IMABONG AND A GENERATION THAT REFUSES TO HIDE
Then there is Imabong.
Unlike awareness campaigns that appear only during designated periods, her advocacy is closely connected to her everyday experience.
As a content creator living with sickle cell disease, she has used social media to discuss the realities of managing the condition while building a career and maintaining a public presence.
That creates a unique challenge.
Social media rewards consistency.
Sickle cell does not always allow it.
A creator may have plans for the day, content to produce and an audience waiting for an update.
Then pain arrives.
The body demands rest.
Medical care takes priority.
Plans change.
For someone whose livelihood and public identity are connected to content creation, illness can become a professional and emotional challenge as well as a medical one.
Imabong’s willingness to discuss these realities adds another dimension to the conversation.
Her story is not simply about surviving crises.
It is about navigating adulthood, creativity, identity and ambition while living with a chronic illness.
And because she communicates directly with an online audience, her experience reaches people where many young Nigerians now consume information: on their phones.
THE STIGMA THAT FOLLOWS THE GENOTYPE
Nigeria’s sickle-cell conversation has historically placed considerable emphasis on genotype compatibility, particularly in discussions about marriage.
Knowing one’s genotype is important.
Understanding inheritance is important.
Genetic counselling is important.
But awareness becomes harmful when it turns into stigma against people living with sickle cell disease.
A person living with sickle cell should not be reduced to a medical diagnosis.
They are not defined solely by their haemoglobin type.
They have careers.
They have ambitions.
They have relationships.
They have families.
They have talents.
They have the right to participate fully in society.
The purpose of genotype awareness should therefore be informed decision-making, prevention and better health outcomes — not discrimination against people who already live with the condition.
GOVERNMENT MUST MOVE BEYOND AWARENESS
This is where the conversation becomes a public-health issue.
Awareness campaigns can encourage Nigerians to understand their genotype.
But awareness alone cannot provide medication.
A social-media campaign can educate people about sickle cell.
It cannot guarantee that a patient will receive appropriate treatment during a crisis.
That requires a functioning health system.
WHO has called for sickle-cell care to be integrated into primary health systems and for improved access to essential medicines. It also identifies early diagnosis, regular monitoring, vaccination and disease-modifying treatment as important components of comprehensive care.
For Nigeria, this means strengthening several areas of care.
These include early diagnosis, newborn and childhood screening, access to essential medicines, safe and reliable blood-transfusion services, specialist care, trained healthcare professionals, health insurance, research and long-term patient support.
The country must also look beyond emergency treatment.
People living with sickle cell need continuity of care.
They need preventive treatment where clinically appropriate.
They need proper pain management.
They need monitoring for complications.
They need access to specialist services.
And they need a healthcare system that does not turn every crisis into a financial emergency.
THE HYDROXYUREA QUESTION
One of the most important examples is hydroxyurea.
WHO identifies hydroxyurea as an effective disease-modifying medicine for sickle cell disease. It can reduce complications and improve outcomes for appropriate patients when prescribed and monitored by qualified healthcare professionals.
Yet evidence from Nigeria shows that access and utilisation remain uneven.
Studies have identified barriers including cost, availability, laboratory-monitoring requirements, knowledge gaps and concerns among both providers and patients.
This illustrates a wider problem in healthcare.
Having an effective treatment is not the same as making that treatment accessible.
For a patient, the distance between medical knowledge and actual care can be the difference between prevention and crisis.
THE FUTURE OF SICKLE-CELL TREATMENT
The treatment landscape is also changing.
For decades, management focused heavily on preventing and treating complications.
Today, there are established disease-modifying therapies, more sophisticated transfusion programmes and increasing interest in curative approaches.
Haematopoietic stem-cell transplantation can provide a cure for selected patients, although access, suitability, risks and cost remain significant considerations.
Gene-based therapies are also creating new possibilities, although their availability and affordability remain major questions, particularly in low- and middle-income countries.
The challenge for Nigeria is therefore twofold.
The country must improve access to effective treatments that already exist.
At the same time, it must prepare its healthcare system for emerging therapies.
That requires investment in specialist training, laboratory capacity, research, patient selection, long-term follow-up and financing mechanisms capable of making advanced treatment accessible to appropriate patients.
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Medical progress is meaningful only when patients can reach it.
SEPTEMBER IS A REMINDER, NOT A DEADLINE
Awareness campaigns have a place.
They can start conversations.
They can encourage testing and education.
They can challenge misconceptions.
But sickle cell disease does not observe a calendar.
When September ends, patients will still experience crises.
Families will still sit beside hospital beds.
Caregivers will still worry.
Doctors and nurses will still manage emergencies.
People living with the disease will still have to navigate education, employment, relationships and everyday life.
The real measure of awareness is therefore not the number of social-media posts published during an awareness campaign.
It is what happens afterwards.
Does a newly diagnosed patient know where to obtain care?
Can a child receive appropriate treatment?
Can a family afford essential medicines?
Can a patient access safe blood when necessary?
Can healthcare workers provide timely and evidence-based care?
Can people living with sickle cell pursue education and employment without discrimination?
Can the health system support them throughout their lives?
Those are the questions that should remain after the awareness campaigns disappear.
BEYOND SURVIVAL
For decades, much of the language surrounding sickle cell has centred on survival.
Surviving childhood.
Surviving the next crisis.
Surviving another hospital admission.
But people living with sickle cell want more than survival.
They want to live.
Adekunle Gold has built a successful music career while speaking openly about the disease that shaped part of his childhood.
Laycon has carried sickle-cell visibility into popular youth culture.
Imabong continues to build her identity as a content creator while publicly navigating life with sickle cell disease.
Their stories are different.
But together, they challenge the idea that sickle cell must determine the boundaries of a person’s life.
A diagnosis can shape someone’s journey.
It does not have to determine its destination.
THE PEOPLE BEHIND THE GENOTYPE
There is a child who wants to play.
A student who wants to graduate.
A young person who wants to build a career.
A content creator who wants to create.
A musician who wants to perform.
A parent who wants to watch their children grow.
A family that simply wants another ordinary day.
They may live with sickle cell.
But they are more than sickle cell.
That is perhaps the most important message Nigeria should take from the continuing conversation around the disease.
Know your genotype.
Understand sickle cell disease.
Seek appropriate medical care.
Support people living with the condition.
Challenge stigma.
Listen to patients.
Demand better healthcare.
And remember the person behind the diagnosis.
Because a genotype is a medical fact.
It is not a person’s identity.
And sickle cell may be part of someone’s story.