Can you share your experience with heart valve disease?
I was born with a heart murmur, and my parents quickly began to search for a diagnosis. They soon discovered that I had an aortic valve defect, and I was diagnosed with congenital heart disease. Throughout my journey with heart valve disease, I had three open heart surgeries, two stints, and two pulmonary valve replacements, as well as three pulmonary valve repairs.
What encouraged you to become a patient advocate?
As a young girl, I realized that my parents were my best advocates. My parents made sure they included me in conversations with my doctors. As an adult, I realized that being an advocate is my call in life. Patient advocacy has allowed me to find power in my voice, as well extend it to the heart valve disease community.
Why do you think it is important for other patients living with heart valve disease to share their story?
It is important to share your story because it may inspire others. There may be people who have similar experiences to you, and your story can empower them to speak up. I believe stories are the connective tissue of humanity. Sharing your story not only empowers others but also raises awareness. When awareness is raised, people will learn they have options for additional opportunities and resources.
In your opinion, what can patients, health professionals, and advocacy groups do to continue raising awareness about valve disease?
Patients can play a crucial role in raising awareness about valve disease by educating themselves about their condition and sharing their experiences with others. When patients are informed, they can empower their peers to recognize symptoms, seek timely care, and advocate for their health. Additionally, patient advocates should actively engage in their communities—whether by participating in support groups, sharing their stories on social media, or collaborating with advocacy organizations—to amplify awareness and drive change.
For health professionals, addressing barriers to care is essential. This includes improving early detection through routine screenings, enhancing patient-provider communication, and ensuring equitable access to treatment options. Healthcare providers can also support awareness efforts by educating their patients about risk factors and symptoms and advocating for policy changes that improve patient outcomes.
Advocacy groups can continue to make a significant impact by fostering partnerships with healthcare organizations, policymakers, and the media to amplify the importance of valve disease awareness. They should prioritize outreach campaigns, educational resources, and policy initiatives that drive better detection, diagnosis, and treatment. Collaboration among patients, providers, and advocates is key to ensuring that valve disease remains a public health priority.
What is one fun fact that others may not know about you?
I love music and dancing!
