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.
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, UGMC, speaking at a symposium to commemorate World Haemophilia Day on Friday, 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.
“People are suffering, and beyond the physical challenges, there is a heavy psychological toll,” she said.
“Children with haemophilia cannot always engage in normal activities like their peers, and this can create frustration and misunderstanding.”
Dr Edwin 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.
“In many cases, women are accused or labelled negatively, which affects relationships and families,” she said.
“This is not anyone’s fault. It is a genetic condition, and society must move away from blame to support.”
Dr Edwin stressed the need for collective responsibility, adding; “We need communities, schools, healthcare workers, and families to work together.”
“Support can be emotional, social, or practical – such as giving caregivers a break. These small actions make a big difference.”
She 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, UGMC, attributed Ghana’s challenges to low awareness, limited diagnostic capacity, and restricted access to treatment centres.
“Many people do not even know the disease exists. Some attribute it to witchcraft or avoid medical care altogether,” she said.
“Meanwhile, confirmatory tests are often done outside the country, making diagnosis expensive and inaccessible.”
She added that although clotting factor treatments were provided free through collaboration with international partners and the Ghana Haemophilia Society, patients still incur costs related to hospital services and travel.
“Delayed or untreated haemophilia can result in joint damage, disability, chronic pain, and disruptions in education due to frequent hospital visits,” she noted.
Dr Awuku called for a coordinated national response focused on awareness, training, infrastructure, and system-wide support.
“With the right care and understanding, people living with haemophilia can lead full, healthy lives. But it starts with awareness and society’s willingness to support, not stigmatise,” she said.
This year’s World Haemophilia Day is on the theme: “Diagnosis: First Step to Care,” highlighting that more than 75 per cent of people with haemophilia globally remain undiagnosed.
This 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 whether a patient had haemophilia A or B, as well as the severity of the condition.
“Diagnosis is the first step to care,” she emphasised. “Once identified, treatment is available through replacement of the missing clotting factors, enabling patients to live normal and productive lives.”
Despite this, Ghana continues to face a significant diagnosis gap. It is estimated that more than 3,000 people may be living with haemophilia, yet only about 500 cases have been officially recorded.
Dr Okudzeto reiterated the need to end stigma, reduce treatment costs, and strengthen structures, awareness, training, and healthcare systems to effectively address haemophilia.
GNA
