Abuja: 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, and adults live with preventable complications, often without knowing the cause.
According to News Agency of Nigeria, health experts highlight that such experiences are not isolated but reflect a largely invisible crisis driven by undiagnosed bleeding disorders, including haemophilia. Haemophilia is a rare genetic condition affecting the body’s ability to clot blood, leading to prolonged bleeding after injury, surgery, or spontaneous internal bleeding.
The World Health Organisation (WHO) notes that inherited bleeding disorders are caused by the absence or low levels of proteins essential for blood clotting. The organisation also points out that only about 34 percent 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. Prof. Titilope Adeyemo, Director of the Haemophilia Treatment Centre at Lagos University Teaching Hospital, highlighted that Nigeria had diagnosed just six percent of its estimated haemophilia population, compared with about 81 percent in developed countries.
In response, a new initiative, ‘Road to Clot: Reaching the Undiagnosed,’ by the Haemophilia Foundation of Nigeria (HFN), seeks to change the narrative. The initiative is a patient identification and early detection program designed to take screening services directly to communities and bridge gaps in diagnosis and care.
Mrs. Megan Adediran, Executive Director of HFN, emphasized that 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. She 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.
Some patients living with haemophilia also highlighted the burden of stigma and poor awareness surrounding the condition. Mr. Timothy Adediran, 30, cited cases of stigmatisation and called for increased public awareness of the disease, its management, and treatment.
Meanwhile, Dr. Alayo Sopekan, Director and National Coordinator for Non-Communicable Diseases at the Federal Ministry of Health and Social Welfare, said haemophilia had been incorporated into the national non-communicable diseases policy and strategic action plan. Sopekan added that efforts were ongoing to ensure 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. Stakeholders emphasized 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 say 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.