Can you share your experience with heart valve disease? 

I had little knowledge about heart valve disease until May 2021, when my husband’s echocardiogram results came through his MyChart on a Saturday morning. As we read the report together, we learned about severe aortic stenosis for the first time. It was a pivotal and overwhelming moment. That moment marked the beginning of a journey that would forever change BOTH of our lives. 

What encouraged you to become a patient advocate?  

As we started down the path of heart valve disease awareness, we quickly realized how many people are struggling with this issue. We were very fortunate to have each other’s support, but we realized almost immediately many were on this path alone. We knew we could empower others, encourage, improve awareness, influence change, and it even allowed us to find our purpose. Being a patient advocate opened doors to new friendships and relationships within the heart community, and we became new faces for positive experiences. 

How did you become involved with Heart Valve Voice US and other heart health advocacy organizations?  

My husband was searching for some support groups and immediately came across one on Facebook that we joined. That started an avalanche of communication with others dealing with heart valve disease, new contacts, and links with other organizations – the first being HVV-US. 

Since then, we have participated in making videos for HVV-US and the CDC, are part of a patient-centered outcome program, and, as a Care Partner, became a Board Member for HVV-US. We are fully engaged in the Voices of Support Zoom gatherings, which have been held monthly since their inception years ago.   

Why do you think it is essential for other patients living with heart valve disease to share their stories? 

Our voices, telling our stories, can inspire and uplift others. I believe it’s essential for patients and care partners living with heart valve disease to continually share our stories because they become powerful testimonies!  

By sharing the struggles, hardships, triumphs, good days, and victories we’ve been blessed to achieve, we inspire hope and help to provide understanding for others. The advances that have transpired in heart valve disease have been nothing short of life-changing; they are true miracles. 

In your opinion, what can patients, health professionals, and advocacy groups do to continue raising awareness about valve disease? 

As with any disease, there’s always a stigma that the patient has done something wrong. Patients may also feel shame associated with the disease. Patients, health professionals, and advocacy groups can increase awareness by continuing to provide information, increasing knowledge and wisdom surrounding treatment, and therefore removing any stigmatism or false based fear.  

Before, February, to me simply meant Valentine’s Day. Now, it has a whole new meaning as I’ve walked this heart valve disease journey with my husband for four years. Social media is at everybody’s fingertips and is a great instrument to bring about awareness, podcasts are a tool used daily by many! The bottom line is that we all just need to talk about it more. I don’t think my PCP has ever mentioned heart valve disease to me – health professionals need to talk about it. We are so grateful that when my husband was at an annual checkup, his PCP slowed down, listened to his heart, and found a slight murmur. This caring action saved my husband’s life. 

What is one fun fact that others may not know about you? 

I have been blessed with a colorful life, from competitive freestyle roller skating in my younger days to owning an automotive shop and now working in the non-profit sector for almost 14 years.