Sickle cell disease (SCD) is a recessive genetic disorder resulting from change in the nucleotide that codes for the beta-globin subunit of the hemoglobin protein. It causes the red blood cells to develop a sickle shape that blocks the patient’s capillaries, obstructing blood flow of those who have two mutated copies of the gene. One mutated copy of the gene results in sickle cell trait: people with just one copy of the mutated gene are carriers who may pass the mutation to their children but, oftentimes, do not suffer from SCD symptoms (Gabriel, 2010). Sub-Saharan Africa is one of the regions with the highest prevalence of SCD. There, 240,000 babies are born with the disease annually, and of them, 50-80% will die before their fifth birthday (Mwebembezi, 2016).

Allocating resources to mitigate disease burden in a country like Uganda is more important now than ever before given the increasing national prevalence. As of 2020, 0.7% 13.3% of the country’s population had the disease while 13.3% of citizens had the trait, although the precise percentage varies greatly by region (Hernandez et al., 2020). Fortunately, informing people of these statistics and the meaning behind them seems plausible given Uganda’s historic success in launching health campaigns, most notable with HIV, and global interest in researching genetic disorders (NIH, 2019). This was subsequently explored in a pilot study conducted by Dorothy Nam (DGHI MsC ‘22) in collaboration with Kalangala Health Centre IV. Their study, conducted during the summer of 2021, highlighted the gap in understanding of SCD in Kalangala, a town on Bugala Island on Lake Victoria. They found that the local youth, while familiar with the disease’s implications, lacked an understanding of its pathology. Much of this was attributed to deficient education and community engagement, exacerbated by economic barriers. They found that an efficacious intervention in this community would need to confront the disease’s stigma, and leverage mixed media to reach a diverse demographic (Nam, 2022).

Building off of this, this year twin teams—Duke undergraduate students working closely with a Ugandan university students born and raised in Kalangala—leveraged different pedagogical methods to enhance community understanding of SCD, thereby decreasing stigma. Taking Nam’s foundational work into account, a major component of this was creating a three-part video series in the local language, Luganda. Ultimately, the goal is to create an accessible and engaging teaching tool that can be leveraged by community stakeholders to incite conversations about SCD that are not relegated to literate members of the community and/or those who have learned English.