Background
Critical answers to improving disease outcomes may not solely come from basic science, but additionally through understanding the personal stories of those directly affected by the disease. I present my story: after an inadequately treated Strep A infection, I was diagnosed at age 11 with acute rheumatic fever (ARF) and rheumatic heart disease (RHD) with congestive heart failure and arrhythmia.
Challenges
I underwent two open-heart surgeries for repair, then a mechanical valve replacement. Living with this preventable disease from adolescence into womanhood has profoundly impacted my life and well-being.
As a child, my first electrocardiogram terrified me. I cried, convinced that I was going to receive an electric shock and might die. My young mind only understood the word “electric,” and it triggered fear. Similarly, the intense pain associated with the benzathine penicillin G injections made me anxious for the next injection meaning I often delayed or missed doses.
Significance
These challenges (delayed treatments, limited access to antibiotics/healthcare, reproductive issues and anxiety) highlight the complex realities faced by people living with RHD. These also demonstrate how these factors may undermine the effectiveness of both research efforts for prevention and treatment. To improve health outcomes, it is essential that the voices of lived experience are meaningfully integrated into research and policy. Through my involvement with global health organizations and RHD patient alliances, I have turned my lived experience into an opportunity to advocate for change in narratives of Strep A infection, ARF and RHD.