UGMC discloses 2,500 haemophilia cases undiagnosed in Ghana

The University of Ghana Medical Centre (UGMC) has raised concern over a significant diagnosis gap in haemophilia cases in Ghana, warning that thousands may be living with the condition unknowingly.

Medical experts at the facility estimate that more than 3,000 people could be affected nationwide, yet only about 500 cases have been officially recorded, leaving a large number undiagnosed and without access to care.

Speaking at a symposium to mark World Haemophilia Day, specialists attributed the situation to low awareness, limited diagnostic capacity and widespread misconceptions about the condition.

Haemophilia, a genetic bleeding disorder caused by a deficiency in clotting factors, can lead to prolonged bleeding and, in severe cases, life-threatening internal complications if not diagnosed early and properly managed.

Senior Specialist Haematologist at UGMC, Nana Agyeiwah Awuku, said many people remain unaware of the condition, with some attributing symptoms to superstition rather than seeking medical care.

“Many people do not even know the disease exists. Some attribute it to witchcraft or avoid medical care altogether,” she said, adding that confirmatory tests are often conducted outside the country, making diagnosis costly and less accessible.

She noted that the challenge is compounded by the cost of care, despite the availability of free clotting factor treatment through partnerships involving the Ghana Haemophilia Society. Patients, she said, still bear costs relating to hospital services and transportation.

Beyond the medical challenges, experts also highlighted the psychological and social burden associated with the condition, particularly for children and caregivers who often face stigma and isolation.

Senior Specialist in Bioethics and Palliative Care at UGMC, Ama Edwin, said misconceptions about haemophilia continue to fuel discrimination and emotional distress among affected families.

“People are suffering, and beyond the physical challenges, there is a heavy psychological toll,” she said, noting that children living with the condition often struggle to participate in normal activities.

She also pointed to stigma faced by mothers, who are sometimes blamed due to the hereditary nature of the disease, calling for greater societal understanding and support.

UGMC has called for a coordinated national response focused on increasing awareness, expanding diagnostic services and strengthening health systems to address the condition effectively.

It stressed that early diagnosis remains critical, noting that with proper treatment and support, individuals living with haemophilia can lead healthy and productive lives.

This year’s observance, on the theme “Diagnosis: First Step to Care”, underscores the urgent need to close the diagnosis gap and ensure more patients receive timely and appropriate treatment.