The 2nd Annual International Sickle Cell Centre (ISCC) Conference held on 20th June, 2025 at Tang Palace, Accra —brought together patients, advocates, and healthcare professionals to address the urgent challenges faced by sickle cell warriors, emphasizing prevention, education, and systemic reforms. Personal testimonies and expert insights underscored the gap between available solutions and their accessibility, particularly in low-resource settings.
Shadrack Benjamin, a sickle cell warrior for 20 years, shared his harrowing journey: “Today you are fine, tomorrow you are not. Before ISCC, I was hospitalized four times a month. Now, I’ve learned to cope—going months without admission.”
His story highlighted the unpredictable nature of sickle cell disease (SCD), where pain crises can escalate rapidly without proper management. Another attendee recounted a near-fatal crisis during a trip to Cape Coast, where a lack of nearby specialized care forced an emergency transfer. “The first hospital only gave me tramadol. I struggled to breathe until ISCC intervened,” he said, exposing gaps in emergency SCD care.
Dr. Ernest Konadu Asiedu, Head, Medical and Dental Unit, Ghana’s Ministry of Health outlined national strategies, stressing medications that can help red blood cells form properly from infancy, preventing crises.
Consultant Pediatrician National Focal Person for SCD, Dr. Emmanuel Parbie Abbeyquaye added that unskilled handling of SCD patients can worsen outcomes, calling for standardized training.
Dr. Eugenia Owiafe, a specialist hematology nurse, Korle Bu Teaching Hospital, Child Health Department, lamented low compliance with newborn screenings: “We need nationwide coverage and government support to ensure every child is tested”.
Dr. Judith A. Oscar-Larbi, Co-Director MSc Genetic counseling, WAGMC, emphasized premarital genotype testing: “Counseling helps couples understand risks before having children.” Meanwhile, Dr. Maame Amoakohene, Associate Director, CHAI detailed efforts to sustain screening programs in Ghana, noting “reducing diagnostic costs and partnering to reach children under five” as critical goals.
Before the conference concluded, there was a stirring performance by the University of Ghana’s Abibigromma School of Performing Arts, symbolizing hope amid struggle. Panelists unanimously urged systemic changes—from compulsory screenings to affordable treatments—to transform SCD from a “death sentence to a manageable condition.” As CEO and Co-founder, Dr. Mary Dede Asong, reminded the audience, “Awareness saves lives. Know your genotype.”
