For many Nigerians living with unexplained bleeding, life has remained a cycle of pain, confusion and unanswered questions.
Across communities, children bruise easily, youths endure repeated hospital visits, while adults live with preventable complications, often without understanding the underlying cause.
Ten-year-old Emmanuel’s frequent bruises and bleeding were initially dismissed as signs of an active child.
His mother, Blessing, recalled that minor falls often resulted in prolonged bleeding, leaving the family anxious but without clear answers.
“We went to various hospitals, prayer houses for deliverance and even traditional centres, where we were asked to perform cleansing rites and given some forms of traditional treatment.
“Yet, the bleeding persisted, and we still didn’t understand what was happening,” she said.
She explained that it was not until a severe bleeding episode following a tooth extraction that doctors suspected a deeper problem, after which he was diagnosed with haemophilia.
Similarly, Maryam Abdullahi recounted losing her newborn first son to uncontrolled bleeding after circumcision.
“We blamed the local woman who carried out the circumcision, not until years later, when my third son was diagnosed with haemophilia, that I understood what actually happened,” she said.
Health experts say such experiences are not isolated but reflect a largely invisible crisis driven by undiagnosed bleeding disorders, including haemophilia.
Haemophilia is a rare genetic condition that affects the body’s ability to clot blood, leading to prolonged bleeding after injury, surgery or spontaneous internal bleeding.
According to the World Health Organisation, inherited bleeding disorders are caused by the absence or low levels of proteins essential for blood clotting.
The organisation notes that only about 34 per cent of the expected global population of people with haemophilia has been identified, underscoring significant underdiagnosis.
At the recent Nigeria Inherited Blood Disorders Leadership Forum, experts identified poor recognition, limited diagnostic capacity and high treatment costs as major barriers to effective care.
The Director, Haemophilia Treatment Centre, Lagos University Teaching Hospital, Prof Titilope Adeyemo, said Nigeria has diagnosed just six per cent of its estimated haemophilia population, compared with about 81 per cent in developed countries.
Adeyemo noted that diagnostic capacity remains limited, with only a few facilities, mostly in urban centres, able to conduct factor assays and confirmatory tests.
She added that the irregular supply of donated concentrates leaves many patients without consistent treatment.
Also, Prof Sulaimon Akanmu of the Department of Haematology and Blood Transfusion, College of Medicine, University of Lagos, said that with Nigeria’s population exceeding 200 million, about 18,000 people are expected to be living with haemophilia.
He, however, noted that only 941 patients have been diagnosed nationwide, describing the figure as grossly inadequate.
In response, a new initiative, “Road to Clot: Reaching the Undiagnosed,” by the Haemophilia Foundation of Nigeria seeks to change the narrative.
The initiative is a patient identification and early detection programme designed to take screening services directly to communities and bridge gaps in diagnosis and care.
The Executive Director of the foundation, Mrs Megan Adediran, said the gap represents real people: children, youths and adults, who continue to live with unexplained bleeding, repeated hospital visits, preventable disability or even death due to lack of proper diagnosis.
Adediran, who also shared her experience as a mother of two children living with haemophilia, highlighted the emotional, physical, mental and financial burden on affected families.
“Road to Clot represents hope for families who have been searching for answers for years. It represents dignity for people who have been blamed, misunderstood or neglected because of a medical condition they did not choose.
“It represents a future where no Nigerian has to suffer or die simply because their blood could not clot and no one noticed,” she said.
Adediran explained that the initiative, which began in Bwari Area Council, would be implemented in selected communities nationwide to identify undiagnosed cases of haemophilia and other inherited bleeding disorders.
According to her, it will also strengthen the national bleeding disorders registry, improve planning and support advocacy for better policies, funding and access to treatment.
Some patients living with haemophilia also highlighted the burden of stigma and poor awareness surrounding the condition.
For instance, Timothy Adediran, 30, cited cases of stigmatisation and called for increased public awareness of the disease, its management and treatment.
Similarly, Bobby Johnson-Etukudoh called for stronger support to reach grassroots communities for early detection of haemophilia and other bleeding disorders.
Meanwhile, the Director and National Coordinator for Non-Communicable Diseases at the Federal Ministry of Health and Social Welfare, Dr Alayo Sopekan, said haemophilia has been incorporated into the national non-communicable diseases policy and strategic action plan.
He added that efforts are ongoing to ensure the availability of clotting factor concentrates and to integrate haemophilia treatment into the National Health Insurance Authority benefits package.
As the world marks World Haemophilia Day 2026 with the theme “Diagnosis: The First Step to Care,” experts say early detection remains a critical challenge, especially in low-resource settings.
According to experts, many Nigerians do not seek medical help due to distance, cost or the belief that persistent bleeding is normal.
Stakeholders emphasised that diagnosis must go hand in hand with access to treatment and support systems, while calling for stronger partnerships with government institutions, healthcare professionals, traditional and religious leaders, civil society and the media to expand awareness.
They noted that the “Road to Clot” initiative is reaching people by taking screening services to schools, faith centres and community gathering points.
In doing so, it is restoring dignity to those affected by stigma and opening access to care for previously underserved patients.
NAN
