Health experts have raised concerns over the high mortality risk among children born with sickle cell disease in Ghana, warning that a significant number may die before the age of five if they do not receive early diagnosis and consistent care.
Co-founder of Heale, Dr Enam Sefakor Bankas, says about 15,000 babies are born with sickle cell disease in Ghana each year, representing roughly two per cent of annual births.
Speaking during activities to mark World Sickle Cell Day, Dr Bankas said up to 80 to 90 per cent of affected children who are not diagnosed early and enrolled in comprehensive care risk dying before age five.
“If they are not diagnosed early, we risk losing 80 to 90 per cent of them before age five,” she warned.
She described the figures as alarming, adding that while public awareness of sickle cell disease has improved, its psychological and emotional impact is often overlooked.
“Most people focus on the physical aspects, the pain and the admissions, but there is a huge emotional and psychological toll,” she said.
According to her, many patients and caregivers continue to face stigma, discrimination, anxiety and social isolation, conditions that worsen their overall quality of life.
Dr Bankas called for the integration of mental health support into routine sickle cell care, stressing that emotional well-being should not be treated as secondary to physical treatment.
“Mental health, wellness and self-care are not luxuries. They are essential components of living well with sickle cell disease,” she stated.
She also advocated for a coordinated national sickle cell programme to improve access to quality care across the country, regardless of location.
“We need comprehensive care. We need to make sure that wherever you are in Ghana, patients can access the quality care they need,” she said.
This year’s commemoration by Heale was held under the theme “Think Heale: Mental Health, Wellness and Self-Care in Sickle Cell Disease,” with calls for stronger policy attention to both the physical and psychological needs of patients.
Advocates say meaningful progress in sickle cell management will depend on shifting focus from treatment alone to a holistic care approach that addresses the full well-being of patients and families.
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