Abstract
This report shares results of the My Sickle Story Survey, a cross-sectional descriptive analysis conducted by the Liverev Sustainable Health Initiative to explore the relationship between genotype awareness and SCD advocacy among Nigerian adults. In the anonymous Google Forms survey administered online, 32 respondents participated. Key study variables included genotype awareness, SCD prevalence experience (personal/community), SCD self-assessed knowledge, and advocacy engagement level. Genotype awareness was 100% across the study sample, however its distribution among various genotype categories differed. 68.75% of respondents assessed their SCD knowledge as a 4 or 5 out of 5. 59.4% actively engage in SCD advocacy. Using regression-like cross-tabulation analysis, personal SCD connection was found to be a stronger indicator of advocacy participation compared to genotype status. Respondents who identified with having an SCD connection to family/self were four times more likely to be actively engaged in advocacy than those without SCD connection. Education, simple contribution mechanisms, and community-based structures were found to be leading advocacy enablers. These finding offer important insights in the design of targeted SCD advocacy campaigns across Sub-Saharan Africa.
Keywords: Sickle Cell Disease, genotype awareness, SCD advocacy, Nigeria, public health, community engagement