By Folasade Akpan
World Haemophilia Day, observed annually on April 17, will this year focus on the theme “Diagnosis: First Step to Care.”
The 2026 theme underscores the importance of early detection as the gateway to treatment and improved outcomes for people living with bleeding disorders.
Haemophilia is a genetic bleeding disorder caused by deficiency of clotting factors, most commonly factor VIII or IX, which prevents the blood from clotting properly and leads to prolonged or spontaneous bleeding.
The condition is inherited in an X-linked pattern, meaning it primarily affects males, while females are usually carriers but can also experience symptoms ranging from mild to severe depending on clotting factor levels.
Globally, the World Federation of Hemophilia (WFH) estimates that over 400,000 people are living with haemophilia, with more than 300,000 yet to be diagnosed, leaving many without access to life-saving care.
According to the global body, “diagnosis is the essential first step in treatment and care,” warning that without diagnosis, patients cannot access life-saving interventions.
Victims recounted their ordeals.
Mrs Olaide Saviour is raising three sons living with haemophilia, a condition which has meant a lifetime of vigilance, sacrifice and difficult choices, including giving up her nursing career to become a teacher so she can care better for them.
Saviour said her ordeal began years before motherhood, when her younger brother experienced prolonged bleeding after circumcision, a condition the family initially attributed to spiritual causes.
The experience repeated itself with her first son, who bled for weeks after circumcision and required blood transfusion, while her third child also suffered severe bleeding as a newborn before the family eventually received diagnosis years later.
“They can bleed anytime, even while sleeping. As a parent, you must always be careful.
“As of yesterday night, one of them had a cut. I had to dress the wound myself and give him factor concentrate. It has not been easy for us as parents of haemophilic children,” she said.
She recalled a life-threatening incident involving her eldest son who is now 14 years of age, who developed a brain bleed after being flogged in school, initially mistaken for malaria.
Similarly, 16-year-old David Ademibe said he endured repeated hospital visits and multiple blood transfusions following prolonged bleeding after circumcision before his condition was diagnosed.
“I have had more than five transfusions in my life. It has not been easy,” he said.
Even a medical doctor did not diagonise his condition until 16 years into his medical practice.
Dr Patrick Uju , the coordinator of the North Central Chapter of the Haemophilia Foundation of Nigeria (HFN), said it was important to increase awareness so more people could be diagnosed and cared for.
“It took me over 16 years of practicing as a medical doctor before I could diagnose my condition.
“So we can imagine how it will be for those who do not even have that privilege,” Uju said.
With thousands of Nigerians estimated to be living with haemophilia and only a little number diagnosed, patients and experts say the country is grappling with a silent but life-threatening health crisis driven by poor awareness, weak diagnostic capacity and limited access to care.
Experts say these experiences reflect a broader national challenge, with Nigeria’s haemophilia burden largely under-recognised and under-diagnosed.
Sulaimon Akanmu, Professor of Haematology and Transfusion Medicine at the College of Medicine of the University of Lagos, estimates that about 18,000 Nigerians should be living with haemophilia, yet only about 941 cases have been documented.
Prof. Titilope Adeyemo, Director, Lagos University Teaching Hospital Haemophilia Treatment Centre, said only about six per cent of cases were diagnosed in Nigeria, compared to about 81 per cent in developed countries.
“The implication is that many people are living with repeated bleeding, disability or dying without knowing the cause,” she said.
Adeyemo identified limited diagnostic facilities, high cost of tests and concentration of services in urban centers as major barriers to diagnosis.
She added that treatment remained largely dependent on expensive clotting factor concentrates, which were unaffordable for most patients and often supplied through irregular donations.
Dr Magdalene Odunvbun, a Consultant Pediatric Hemato-Oncologist, University of Benin Teaching Hospital, also cited low awareness among health workers and the public as key factors delaying diagnosis.
“Symptoms are often misunderstood, leading to late presentation and preventable complications,” she said.
She noted that a shortage of specialists and inadequate treatment centres further limited access to care, particularly for rural populations.
Experts also warn that Nigeria’s reliance on donor-supported treatment is unsustainable, with patients at risk of interruption in care whenever supplies are delayed or unavailable.
Prof. Wuraola Shokunbi of the Department of Haematology, College of Medicine, University of Ibadan, emphasised the need for government commitment, including budgetary provision for haemophilia care, as seen in some other countries.
“We need to ensure patients do not die because treatment is unavailable,” she said.
However, Dr Alayo Sopekan, Director and National Coordinator for Non-Communicable Diseases at the Federal Ministry of Health and Social Welfare, said efforts were underway to strengthen haemophilia care through policy and system reforms.
According to him, haemophilia has been included in the national non-communicable diseases policy and a multi-level guideline is being developed to support early identification and referral at primary, secondary and tertiary healthcare levels.
“We are working to ensure that even primary healthcare workers can identify suspected cases and refer appropriately,” he said.
He said that the government was exploring ways to improve access to treatment, including integrating haemophilia care into health insurance coverage and ensuring availability of clotting factor concentrates.
He added that awareness remained low among the public and health workers, though community sensitisation had commenced.
On data, Sopekan said Nigeria lacked a national haemophilia registry.
“Existing figures reflect only cases seen by clinicians and do not represent the true national burden,” he said.
He, however, said haemophilia would be included in the next national health survey to generate accurate data.
To make detection easier, Sopekan advised parents to watch for prolonged umbilical bleeding, persistent bruising, or joint swelling in children and to report such symptoms promptly at the nearest primary healthcare center.
Stakeholders have also called for increased awareness, improved diagnostic capacity and dedicated funding to support patients.
To address the wide diagnosis gap, the Haemophilia Foundation of Nigeria has unveiled initiatives aimed at taking screening and awareness to communities, with the goal of identifying undiagnosed cases and linking them to care.
The Executive Director, Mrs Megan Adediran, said that the initiative “Road to Clot: Reaching the Undiagnosed,” was designed to take basic bleeding disorder screening directly to communities.
The aim is to identify undiagnosed cases of haemophilia and other inherited bleeding conditions and will move screening from hospitals to communities through mobile testing units and community-based outreach points.
Experts say early diagnosis, improved awareness and sustained investment in treatment are critical to reducing complications and improving quality of life for patients.
For families like Saviour’s, such interventions are urgently needed.
Stakeholders warn that without immediate intervention, countless Nigerians will continue to suffer and die in silence from treatable conditions due to a lack of early diagnosis and proper care.(NANFeatures)
