Vi Tang is one of nearly a million people living in the U.S. with hypertrophic cardiomyopathy, a disease that affects the heart. But unlike many HCM patients, Tang is in the unique position to view the diagnosis from both an intimate angle and a clinical perspective: The 31-year-old student is studying physiology 鈥 with the intention of eventually dedicating himself to HCM research.
鈥淚t鈥檚 interesting to be standing in the middle of three: being a patient, having been a research subject in clinical studies, and now doing some of the research,鈥 Tang says.
It鈥檚 this positioning that he says has helped him have a familiarity of the heart condition but also temper his expectations for a cure or treatment 鈥 something he hopes other patients will understand听and accept.
Tang鈥檚 experience with HCM began at age 15 when living in Vietnam. Upon visiting an after-hours clinic with cold-like symptoms, a doctor listened to his heart and detected a murmur. Tang was tested, referred to a cardiologist, and eventually diagnosed with HCM.
According to the the , in patients with HCM, the heart muscle becomes thickened, which can make it harder for the heart to pump blood. It frequently goes undiagnosed because many people with HCM have few or no symptoms. In some, the condition can cause shortness of breath, chest pain, or changes in the heart鈥檚 electrical system, leading to life-threatening irregular heart rhythms or sudden death.
There are numerous possible complications and no known prevention for HCM. Treatment depends on听the severity of symptoms, but can include medication, surgery, and other procedures. Over the course of his life, Tang has had a cardioverter defibrillator implanted and septal myectomy, an open-heart surgery to remove some of the thickened muscle.
These two procedures took place in the U.S. after Tang moved here to study biology as an undergraduate at in New Jersey. After learning that the University of Michigan had a research team focused on HCM, he applied and was accepted into the Sharlene Day Lab. He鈥檚 now a student in the Ph.D. graduate program in molecular and integrative physiology, studying how proteins move inside of cells.
鈥淢y eventual goal is to do a postdoctoral fellowship and study HCM, and maybe eventually, hopefully, have a career investigating HCM,鈥 Tang says, hoping that any small impact he might have on the research community could ultimately improve patient experiences 鈥 with which he鈥檚 intimately familiar.
鈥淚 wouldn鈥檛 say that being a patient motivates me to work harder,鈥 Tang says. 鈥淲hat it does help make me realize is the disconnect between the research community and the patient community. Sometimes it鈥檚 hard for patients to understand the research because it鈥檚 so technical. It鈥檚 good to have different organizations and advocacy groups to raise awareness of HCM and bridge these disconnections.鈥
Tang emphasizes the need to manage expectations around HCM research: Understand that not every new piece of information will be immediately actionable, and it may not apply to each individual case. He also advises to make sure your physician 鈥渋s someone that you trust, that you can have a dialogue with. And then together, you can work as a team to make good decisions. I think that鈥檚 the best approach: Work with your doctors. It鈥檚 not nothing fancy.鈥
This story is part of the 2023 Health Guide. Read more in our Digital Edition.
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