Why I Chose to Become an Advocate

When I was diagnosed with dilated cardiomyopathy, there was no one I knew living with this condition. Not only that, but I was so sure that I was the only young person being diagnosed with it. I didn’t know where to turn, and most of the time there wasn’t anywhere to turn.

Searching for community within my age group

I started by going to Facebook to look for groups, but the groups didn’t really have any younger people, so it seemed to confirm my theory that I was the only young person diagnosed with the disease.

It wasn’t until I started posting pictures and tagging words like "heart disease" and "dilated cardiomyopathy" that I started receiving direct messages from people who were my age. They were dealing with the same things that I was.

Becoming a voice for young people with CVD

Being diagnosed with heart disease at a young age is very difficult emotionally, physically, and mentally. I remember going to doctor's appointments and people thinking that my mom was the patient instead of me because she was older. I didn’t feel seen, and I wanted to be a voice for young people who have heart disease.

I became an advocate because I was diagnosed at 25 years of age, and I ring the alarm that heart disease can happen at any age. I also wanted to be a voice for people who are no longer here with us and for those who can’t advocate for themselves. I wanted to educate people on the disease and signs to look for so they wouldn’t have to go through what I did in my heart journey.

Confronting myths about heart disease

I was diagnosed after suffering a stroke at a fitness event, and I was so confused. The doctors were just as confused as I was, so they started running tests, and they realized that my ejection fraction was 10 to 15 percent. I had no idea what an ejection fraction was, but when they explained that it was basically a measurement of my heart's function, I began to panic.

After the shock of being diagnosed with heart disease, I wanted to get my story out there for others to see that it can happen to anyone. Prior to being diagnosed, I was leading a healthy lifestyle and maintaining a healthy weight, and I was still diagnosed with heart disease. Many people think that as long as you eat well and exercise, these things preclude you from having cardiovascular disease, but that’s far from the truth.

Raising awareness from local to national levels

My main reason for becoming an advocate is to raise awareness, and to do that, I’ve been involved with writing articles for CardiovascularDisease.net. I’ve also joined the American Heart Association for their national Heart Walk, as well as Lobby Day in Washington, DC, at the Capitol. On Lobby Day, we talk with our local representatives about the importance of funding research on heart disease and about banning vapes for teens. We put vaping on the list because many tobacco companies market fruit flavors that appeal to teens.

I also hope to bring more attention to heart disease in middle and high school athletes. My goal is to get Congress to pass a law that requires more stringent physicals that evaluate students' heart health. This will be a preventative measure to help everyone. In advocating, I hope to empower other patients and their families.