As the global community observes World Sickle Cell Disease Day, health professionals have stressed that many deaths associated with sickle cell disease are often the result of delayed treatment, inadequate healthcare access and economic hardship rather than the condition itself.
They argued that with proper management, timely medical attention and improved support systems, many individuals living with the disorder can enjoy long and productive lives.
According to the World Health Organization (WHO), sickle cell disease is a group of inherited blood disorders caused by mutations affecting haemoglobin, the protein responsible for carrying oxygen throughout the body.
The genetic abnormality leads to the production of defective haemoglobin, causing red blood cells to become rigid and crescent-shaped instead of flexible and round.
These abnormal cells can obstruct blood vessels, restrict blood flow and trigger complications such as severe pain, anaemia and organ damage.
World Sickle Cell Disease Day is marked annually on June 19 to promote awareness, encourage better care and advocate for improved support for people living with the condition. The 2026 theme is “Closing the Survival Gap: Equity in Sickle Cell Disease.”
A Consultant Haematologist at the University College Hospital (UCH), Ibadan, Prof. Taiwo Kotila, said poor management of sickle cell-related complications remains one of the leading causes of death among patients as they grow older.
She noted that the prevalence of the disease remains between two and three per cent, warning that Nigeria’s overall burden would continue to increase alongside population growth.
Kotila explained that several treatment options are available in Nigeria, including hydroxyurea therapy and bone marrow transplantation, while gene therapy remains largely inaccessible.
She called for improved access to proven treatments, especially hydroxyurea, which she said should be made more affordable and included under the National Health Insurance Authority (NHIA) coverage.
The haematologist also challenged the widespread belief that people living with sickle cell disease have a shortened lifespan.
According to her, advances in care and consistent medical follow-up have enabled many patients to live well into their forties, fifties and beyond.
Kotila urged authorities to prioritise research, healthcare funding and comprehensive management programmes for sickle cell disease, given Nigeria’s status as the country with the highest burden globally.
She also advocated the integration of newborn screening for sickle cell disease into routine antenatal and maternal healthcare services nationwide.
Addressing patients, she cautioned against becoming complacent with age, stressing that regular clinic visits remain essential regardless of how well individuals may feel.
She explained that continuous monitoring helps detect and prevent complications that often emerge later in life.
Also speaking, Dr Toyin Aniagwu, a nurse and health promotion specialist at UCH, emphasised the importance of prevention, patient education and proper pain management.
She described sickle cell disease as a hereditary condition that cannot be transmitted from one person to another.
Aniagwu explained that sickled red blood cells have a significantly shorter lifespan and can block blood vessels, leading to recurrent pain crises, anaemia and other serious health complications.
According to her, daily management largely revolves around preventing crises and reducing the risk of complications.
She highlighted adequate hydration as one of the most effective preventive measures, noting that dehydration increases blood thickness and promotes sickling.
Aniagwu also recommended routine vaccinations against diseases such as influenza, hepatitis B, meningitis and pneumonia, alongside malaria prevention measures.
She stressed the importance of adhering to prescribed medications such as hydroxyurea and folic acid, which help reduce the frequency and severity of painful episodes.
Maintaining stable body temperature is equally important, she said, as exposure to extreme cold can trigger blood vessel constriction and worsen symptoms.
The specialist encouraged patients to attend routine medical check-ups every three to six months, even when symptoms are absent, to assess organ function and monitor potential complications.
She identified dehydration, infections, temperature extremes, low oxygen environments and excessive physical or emotional stress as common triggers of sickle cell crises.
Aniagwu advised families and caregivers to seek immediate medical attention when patients experience warning signs such as chest pain, breathing difficulties, persistent fever or prolonged painful erections.
She also discouraged harmful practices such as applying ice to painful areas, explaining that cold temperatures can worsen blood vessel blockage.
Other common mistakes, she noted, include delaying treatment, poor fluid intake, misuse of medications and forcing patients to engage in strenuous activities during crises.
For young adults living with the condition, Aniagwu said sickle cell disease should not prevent individuals from pursuing education, careers or family life, provided they plan appropriately.
She underscored the importance of genotype testing before marriage to help couples understand genetic risks and make informed reproductive decisions.
Regarding pregnancy, she advised women with sickle cell disease to seek specialist medical guidance before conception and throughout pregnancy to minimise risks.
Aniagwu further called on government to subsidise hydroxyurea, establish specialised sickle cell clinics across all states and implement mandatory newborn screening programmes.
She also advocated free premarital genotype testing and stronger public education campaigns to reduce stigma and improve awareness.
According to her, society must move beyond stereotypes and treat people living with sickle cell disease with dignity and respect.
Health experts at the event agreed that improving survival rates will require coordinated action involving government, healthcare providers, civil society organisations and communities.
They maintained that while sickle cell disease is inherited, many of its most devastating outcomes can be prevented through early diagnosis, affordable treatment, regular medical care and informed decision-making.
The experts concluded that expanding access to healthcare services, strengthening public awareness and implementing supportive policies remain critical to improving the quality of life and long-term survival of people living with sickle cell disease in Nigeria.