sickle cell disease education and Free testing in Nigeria

ADEBISI KNOW YOUR STATUS (AKYS) – A sickle cell awareness event

Nigeria bears the world's highest burden of Sickle Cell Disease (SCD). Each year, approximately 150,000 children are born with SCD in the country, and nearly 50 million Nigerians carry the sickle cell trait. Many cases remain undiagnosed due to limited access to testing facilities, especially in rural areas. The cost of testing ranges from ₦5,000-15,000 (£2.33-6.99), making it prohibitively expensive for many families, particularly when compared to Nigeria's minimum wage of ₦70,000 (£32.61) – which many rural households do not even earn in full. Beyond financial barriers, widespread stigma and misconceptions about sickle cell disease persist throughout communities, further complicating early detection and management efforts.

The Kudirat Adebisi Oyawoye Foundation, registered under Nigerian federal law, operates the AKYS initiative to address these critical needs. Our mission is to reduce the prevalence of Sickle Cell Disease through education, testing, and support.

Since our founding in 2021, we have provided free sickle cell testing to nearly 2,500 individuals across three local government areas in Kwara State. What began as a family initiative has grown into a registered foundation with increasing impact. In 2024, we expanded our services by launching the Warrior Care Kit program, providing essential medication, hydration supplies, and warmth items to individuals living with SCD at point diagnosis.

A cornerstone of our approach is inclusive community education. We conduct all awareness activities in local languages to ensure understanding and create age-appropriate learning materials for children. This culturally sensitive approach has allowed us to effectively reach communities where information about sickle cell disease was previously limited or misunderstood.

Diagnosis typically takes about a week in Nigeria, AKYS employs rapid diagnostic test kits that deliver results in just 30 minutes from sample collection. This quick turnaround transforms the testing experience and enables immediate intervention.

On-site medical professionals provide immediate consultation for those diagnosed with SCD or sickle cell trait, offering health advice and necessary interventions during the same visit. Understanding that malaria is endemic in these regions and significantly complicates sickle cell disease, we also provide malaria testing and management as part of our comprehensive approach.