LAGOS, Nigeria(VOICE OF NAIJA)- Nigeria has launched the “Road to Clot” initiative, targeting undiagnosed hemophilia cases through community screening aimed at improving early detection, treatment access, and reducing preventable deaths linked to inherited bleeding disorders.
Hemophilia is a rare genetic condition that prevents blood from clotting, leading to prolonged bleeding after injury, surgery, or even spontaneously.
The World Health Organization (WHO) notes that inherited bleeding disorders result from missing or low levels of clotting proteins, with only about 34 percent of people with hemophilia globally identified.
According to reports by seasoned journalist Justina Auta of the News Agency of Nigeria (NAN), many Nigerians living with unexplained bleeding disorders continue to face years of pain, misdiagnosis, and confusion, often without knowing the real cause of their condition.
Across communities, children who bruise easily are often dismissed as overly active, while repeated bleeding episodes send many families through cycles of hospital visits, traditional remedies, and unanswered questions.
Auta highlighted the case of a ten-year-old child, identified as Emmanuel, whose case reflects this struggle.
His mother, Blessing, said the family initially believed his frequent bruises were harmless.
“We went to various hospitals, prayer houses for deliverance and even traditional places, where we were asked to perform cleansing rites and administered some traditional purification. Yet, the bleeding persisted and we still didn’t understand what was happening,” she said.
The turning point came after a severe bleeding episode following a tooth extraction, when doctors suspected an underlying disorder and confirmed haemophilia.
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Similarly, Maryam Abdullahi shared how she lost her newborn son to uncontrolled bleeding after circumcision.
“We blamed the local woman that carried out the circumcision, not until years later when my third son was diagnosed with hemophilia that I understood what actually happened,” she said.
As a result, health specialists marking World Haemophilia Day 2026, themed “Diagnosis: The First Step to Care,” stressed that early detection remains critical, especially in low-resource settings where many patients do not seek care due to cost, distance, or lack of awareness.
Experts maintain that these experiences reflect a wider but largely hidden public health challenge caused by undiagnosed inherited bleeding disorders.
In response to these concerns, the Haemophilia Foundation of Nigeria (HFN) has launched the “Road to Clot: Reaching the Undiagnosed” initiative to improve early detection and expand access to screening at community level.
HFN Executive Director, Mrs Megan Adediran, said the programme seeks to reach children, youths, and adults living with unexplained bleeding and undiagnosed conditions.
“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,” Adediran said.
She added that the initiative, which began in Bwari Area Council, will expand nationwide, strengthen the national bleeding disorders registry, and support better health planning and policy development.
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Recently, at the Nigeria Inherited Blood Disorders Leadership Forum, experts highlighted weak diagnosis systems, poor awareness, and high treatment costs as key barriers to care.
Professor Sulaimon Akanmu of the University of Lagos said Nigeria’s population suggests about 18,000 people may be living with hemophilia, yet only 941 cases have been diagnosed nationwide.
The Director of the Haemophilia Treatment Centre at Lagos University Teaching Hospital, Prof. Titilope Adeyemo, said Nigeria has diagnosed only about six percent of its estimated hemophilia cases, compared with about 81 percent in developed countries.
She also noted limited diagnostic facilities and inconsistent availability of clotting factor concentrates.
Adding to this concern, patients have also continued to speak about stigma and lack of awareness.
Thirty-year-old Timothy Adediran called for stronger public education to improve understanding of haemophilia, while Bobby Johnson-Etukudoh urged deeper grassroots outreach for early detection.
From the government side, the Director and National Coordinator for Non-Communicable Diseases at the Federal Ministry of Health and Social Welfare, Dr. Alayo Sopekan, said hemophilia has now been included in national policy frameworks, with efforts underway to expand access to clotting factor treatment and health insurance coverage.
Notably, the “Road to Clot” campaign continues to take screening services to schools, faith centres, and community gatherings, helping identify undiagnosed cases while restoring dignity to affected families and improving access to life-saving care.
(NAN)
