As Ghana joined the world in observing World Sickle Cell Day, voices from medical experts, patients, and advocates converged to spotlight the harsh realities faced by people living with sickle cell disease (SCD) while urging for greater national commitment to support and treatment advancements.
Dr. Eunice Agyeman Ahmed, a haematologist at Komfo Anokye Teaching Hospital, reminded the public that although sickle cell primarily affects Africans—with nearly 70% of cases in Sub-Saharan Africa—it is a global health issue extending to Southeast Asia, the Middle East, and the Mediterranean.
SCD is a genetic blood disorder that causes red blood cells to become rigid and crescent-shaped, impairing oxygen transport and leading to painful crises, chronic anaemia, jaundice, and increased vulnerability to infections and organ damage. “Pain, especially in bones and joints, is the defining symptom and can be debilitating,” Dr. Ahmed explained.
Adding a personal perspective, Lily Darko, a 44-year-old living with sickle cell, shared her journey marked by frequent hospital stays and the loss of her twin sister to the disease. Despite a persistent leg ulcer, she has managed to live a disciplined life for the past decade outside the hospital environment. Her message to others: “Stay positive, take your medication, hydrate well, and live fully.”
While advanced treatments like bone marrow transplants and gene therapy offer potential cures, their prohibitive costs and limited availability in Ghana pose major barriers. Dr. Ahmed emphasized hydroxyurea, an affordable drug accessible locally, as a practical option to reduce complications, alongside folic acid, antibiotics, and routine medical care.
The stigma and social isolation attached to SCD remain pressing concerns. Haematology nurse specialist Candace Fleischer Djoleto noted how patients often face discrimination in workplaces and schools, and suffer social exclusion. She stressed the importance of empathy and community support, sharing how connecting a despondent patient with Lily’s story transformed his outlook on life.
With about 15,000 children born with sickle cell each year in Ghana, advocates are calling for a comprehensive national strategy to improve early diagnosis, increase access to treatment like hydroxyurea, provide genetic counseling, and fight stigma.
“This is not just a medical condition; it is a societal challenge requiring education, compassion, and systemic support,” Candace concluded.
World Sickle Cell Day in Ghana thus serves as a vital reminder: with the right policies and public awareness, those living with sickle cell can lead healthier, more fulfilling lives.
