The University of Ghana Medical Centre (UGMC) has issued a health alert, citing a significant diagnosis gap in haemophilia, a rare genetic bleeding disorder in which the blood does not clot properly, in Ghana.

The facility raised the concern at a symposium held on Friday, April 17, at its premises in Accra to mark World Haemophilia Day under the theme “Diagnosis: First Step to Care.” It underscored the urgent need to close the diagnosis gap and ensure more patients receive timely and appropriate treatment, warning that thousands may be living with the condition unknowingly.

According to experts at UGMC, more than 3,000 people may be living with the condition nationwide; however, only about 500 cases have been officially documented, leaving many undiagnosed and without access to care.

They attributed the diagnosis gap to low awareness, limited diagnostic capacity and facilities, as well as widespread misconceptions about the condition.

Senior Specialist Haematologist at UGMC, Nana Agyeiwah Awuku, said many people remain unaware of the disease, 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, citing limited access to diagnostic facilities in the country.

According to her, confirmatory tests are often conducted outside the country, making diagnosis costly. She also linked the challenge to the cost of care, noting that despite the availability of free clotting factor treatment through partnerships involving the Ghana Haemophilia Society, patients still bear costs related to hospital services and transportation.

UGMC 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 added that some mothers are stigmatized and blamed for passing on the condition, despite its genetic nature.

Consequently, UGMC called for a coordinated national response focused on increasing awareness, expanding diagnostic services, and strengthening the health system to address the condition effectively. It also emphasized the importance of early diagnosis, timely treatment, and adequate support to help individuals living with haemophilia lead healthy and productive lives.