Stephanie Bowden was only 11 years old when she was diagnosed with hypertrophic cardiomyopathy (HCM), an inherited condition that causes the heart muscles to thicken abnormally. Three years later, she needed open-heart surgery to save her life.
“I always knew I would go into the medical field after having surgery at 14,” said Bowden, who now works as an assistant project manager with the division of public health sciences at Wake Forest University School of Medicine. “Even before that, I was starting to think about research because they were throwing all the medicines they had at me, and it wasn’t working. We knew we were headed toward surgery.”
HCM affects an estimated one in 500 people, with nine in 10 patients being women. If a parent has the gene variant, there is a 50% chance they will pass it to their child, but not all go on to develop the condition. For those that do, severity varies. Stephanie’s younger sister, Allison, was diagnosed at age 14 and had open-heart surgery at 19.
From patient to teammate
Stephanie was born, raised and currently lives in Pinnacle, North Carolina, so it was natural for her family to seek care for her at Atrium Health Wake Forest Baptist Medical Center. Her pediatric cardiologist, Dr. Derek Williams, the section head of pediatric cardiology and clinical associate professor of pediatric cardiology, still works there, as does her primary care physician, Dr. Dana Winn.
“I cannot say enough about Dr. Winn,” Bowden said. “My providers have made such a positive impression on me that I knew I wanted to come back and work for Wake.”
In July 2019, shortly after earning an undergraduate degree in health care administration from East Carolina University, Bowden was hired as a data collector. Now, she supports recruitment and retention for clinical studies focused on overall health that can impact cardiac health, such as obesity, eating habits, diabetes development and vaccines.
She likes the one-on-one interaction with patients and brings her experience and passion to the work of enrolling clinical study participants. “I want to continue to grow within the research field and be even more involved,” Bowden said. “My goal is to eventually manage large studies across multiple clinical sites.”
Go Red for Women
In 2022, Bowden faced two new challenges. She lost her mother to HCM, and she received a new diagnosis: atrial fibrillation (AFib), an irregular heartbeat that can lead to blood clots, stroke and heart failure.
Losing her mother moved Bowden to submit a video to the Go Red for Women campaign, an American Heart Association initiative to educate the public about heart disease in women and raise funds for research. She was selected as one of 12 women in the Go Red for Women 2024 Class of Survivors.
“Stories from the Class of Survivors speak to women across multiple generations about taking care of their heart health and how detrimental it can be if you don’t,” Bowden said. “Sharing my story was a way to memorialize my mom’s life and find meaning in her death. It has been a healing process for me.”
Cardiovascular care: It takes a village
Stephanie’s cardiologists at Wake Forest Baptist have included Dr. Frederic Kahl and Dr. Swethika Sundaravel, a clinical assistant professor of internal medicine and cardiovascular medicine. “Dr. Kahl cared for me and my sister and knew our family history extensively from caring for our late mother and grandfather,” Bowden said. She also receives care from Dr. Dermot Phelan, Atrium Health Sanger Heart & Vascular Institute in Charlotte, an HCM Center of Excellence.
Bowden and her husband, Adam, hope to have children someday. Through genetic testing and in vitro fertilization (IVF), it is possible to avoid passing HCM to a child. “First, we have to work on improving my heart with some treatments that were not available a few years ago,” she said. “And I now take much better care of myself in terms of what I eat, how I exercise and how I manage stress.”
It really takes a village to care for a patient living with a chronic heart condition over a lifetime, Bowden said. “I’m thankful to all my cardiologists and their care teams for ensuring that my heart is pumping well so I can continue to live life well. It would not be possible without their collaboration, hard work and dedication to advancing medicine.”
Learn more about research at Wake Forest University School of Medicine.
Atrium Health Wake Forest Baptist is a pre-eminent academic learning health system based in Winston-Salem, North Carolina, and part of Advocate Health. Atrium Health Wake Forest Baptist’s two main components are an integrated clinical system with locations throughout the region and Wake Forest University School of Medicine, the academic core of Advocate Health and a recognized leader in experiential medical education and groundbreaking research.
