Accra: The University of Ghana Medical Centre (UGMC) has called for increased awareness, early diagnosis, and stronger social support for people living with haemophilia. It warned that stigma, misinformation, and limited access to care continue to endanger lives across the country.
According to Ghana News Agency, haemophilia is an inherited bleeding disorder caused by a deficiency in clotting factors, leading to prolonged bleeding, easy bruising, and, in severe cases, internal bleeding into joints and muscles. Medical experts say while the condition is more common in males, females can be carriers and may occasionally show symptoms.
Dr Ama Edwin, Senior Specialist in Bioethics and Palliative Care at UGMC, speaking at a symposium to commemorate World Haemophilia Day, highlighted the often-overlooked psychological burden of the condition, especially on children and their caregivers. She noted that many people still wrongly believed haemophilia was a supernatural condition, leading to stigma and social isolation.
Dr Edwin emphasized the struggles faced by children with haemophilia, who cannot always engage in normal activities like their peers, leading to frustration and misunderstanding. She explained that simple protective measures, such as wearing helmets or padding during play, could make a significant difference, although children may struggle to understand why they must live differently.
She also drew attention to the emotional strain on caregivers, particularly mothers, who are often unfairly blamed due to the genetic nature of the disease. Dr Edwin stressed the need for collective responsibility and encouraged affected families to seek early medical care, speak openly about their challenges, and utilise available psychological and social support services within hospitals.
Dr Nana Agyeiwah Awuku, Senior Specialist Haematologist and Head of the Haematology/Oncology Department at UGMC, attributed Ghana's challenges to low awareness, limited diagnostic capacity, and restricted access to treatment centres. She highlighted that many people do not even know the disease exists, and some attribute it to witchcraft or avoid medical care altogether.
Dr Awuku highlighted the logistical challenges, noting that confirmatory tests are often done outside the country, making diagnosis expensive and inaccessible. She called for a coordinated national response focused on awareness, training, infrastructure, and system-wide support.
This year's World Haemophilia Day themed 'Diagnosis: First Step to Care' underscores the need to improve diagnostic rates, especially for von Willebrand disease and women with bleeding disorders. Dr Thelma Yawa Okudzeto, Medical Officer, explained that diagnosis involved clotting tests and factor assays to determine the type and severity of haemophilia.
Despite available treatment options, Ghana continues to face a significant diagnosis gap, with an estimated 3,000 people potentially living with haemophilia, yet only about 500 cases officially recorded. Dr Okudzeto reiterated the need to end stigma, reduce treatment costs, and strengthen healthcare systems to effectively address haemophilia.