The Peer Reviewed Medical Research Program (PRMRP) has funded research addressing multiple topic areas related to heart health, including Women’s Heart Disease, since 2015. This particular topic area highlights the reduced rate of diagnosis and treatment for heart disease experienced by women compared to men.¹ Women may also present different heart disease symptoms compared to men. For Darlene Scott, these symptoms included extreme fatigue and shortness of breath. As an avid runner and marathoner, she downplayed these symptoms until they interfered with her daily living and responsibilities as a writing professor. Darlene eventually learned that she suffered from cardiomyopathy, an enlarged heart, which was causing her heart to fail. Further examination revealed that her cardiomyopathy was caused by sarcoidosis, an inflammatory disease that had damaged and scarred her heart tissue. When Darlene realized that her healthy lifestyle alone could not improve her condition, she sought to educate herself on heart disease and wellness practices to better understand how heart disease would impact her life. Her identity as a runner took a step back and she leaned into her passion for education.

To learn more about women’s heart disease, Darlene turned to WomenHeart: The National Coalition for Women with Heart Disease. She worked with an advocate and learned more about living with heart disease, especially as an athlete. Realizing her appreciation for outreach and the empowerment she felt upon learning more about her condition, Darlene grew more involved with the organization and became a WomenHeart Champion. She participates in media advocacy efforts as well as community education to share her story and the challenge of recognizing heart disease, especially for women. Darlene also works with the Foundation for Sarcoidosis Research. Through both of these organizations she continues to learn more about wellness, regain her agency, and share empowerment with others. As part of her work with WomenHeart, Darlene learned of the Congressionally Directed Medical Research Programs and the PRMRP, where she participated in peer review as a consumer reviewer in Fiscal Years 2019 and 2021.

Darlene’s experiences with the PRMRP perfectly aligned with her own mission for education and outreach as she learns from scientific experts and shares her perspective during application reviews. Her experiences with heart disease demonstrate the importance of approaching heart disease research, as she says, “from a gender-attentive lens.” In addition to her education and advocacy work, Darlene has resumed running (but not marathons yet) and also enjoys creating visual art outside of her creative writing work. Still, she looks forward to continuing her advocacy efforts and realizing impactful research for women’s heart disease. In her own words, “Consumer advocacy is an under-utilized resource that will benefit everyone, even those who do not see themselves as consumers of care. I’m excited to be a part of this community and look forward to seeing it grow and, especially, the ways it will evolve research.”

References:

¹https://www.nhlbi.nih.gov/health-topics/education-and-awareness/heart-truth/listen-to-your-heart.