When I was in elementary school, I participated in the American Heart Association’s Kids Heart Challenge. At the time, I just thought it was a fun event that helped show the importance of maintaining heart health. It wasn’t until middle and high school when I realized the importance of these types of events in promoting awareness for people with chronic illnesses.

In 6th grade, my doctor noticed a strange murmur coming from my heart. Heart murmurs are very common in children, and since I had no symptoms, we really didn’t think too much about it, but my doctor thought it was best to schedule an appointment with a cardiologist just to rule things out. A week later, we went to the cardiologist, and what they saw on the echocardiogram was anything but normal. It was determined that I had a condition called rheumatic heart disease, which was something that I have never even heard of. My cardiologist told me that this condition was rare in the United States, but was more common in other places in the world. My heart valve was leaking, and I would eventually need surgery to replace it. I always just told myself, “I’ll cross that bridge when I get there.”

For two years, I had no symptoms. I could keep up with my friends at swim practice, had no activity restrictions, and had the energy to do everything I wanted to. All I had to do was take a couple medications and go see my cardiologist once every few months. One time, she told us that another one of my valves in my heart had started to leak as well. “As long as I don’t have any symptoms,” I told myself, “everything will be fine.”

It wasn’t until high school when I would understand what it meant to be a young person living with a chronic illness.

Initially, I started to feel a little fatigued. I thought it was just from the stress of adjusting to high school. I didn’t think about it too much, but then the fatigue stayed. I noticed that I would have to start taking breaks at swim practice, and would have to pace myself throughout the day. Then, I started to get chest pains and shortness of breath. I mentioned it to my cardiologist, and she adjusted my medications, but I still had symptoms. I felt isolated. Nobody knew what was going on with me. I didn’t know anyone with my condition, and my struggles weren’t visible to my friends and teammates. I felt like I was living a double life - keeping myself together on the outside while hurting on the inside.

At my next appointment, I asked my cardiologist, “Are there any support groups or programs for kids with my heart condition?” However, she didn’t seem to have any options that would fit my needs. I decided to seek out these programs myself. After hours of searching, Googling, and looking through social media, I still did not find something that fit me. 40 million. That is the number of people living with rheumatic heart disease worldwide. Yet I struggled to find people like me, people who understood what it was like.

I came across a few organizations that seemed promising. I reached out to them, and filled out any forms or applications I needed to in order to get involved. However, getting involved and receiving support is a long and tedious process, and I quickly realized that. Currently, I am still in the process of getting involved in a program that fits my needs. Going down this path of trying to find a program to reduce my feelings of isolation also allowed for some self-discovery.

I realized that if I was having trouble finding support, then there are likely thousands of other people in my position looking for the same things as well. I understood that nothing was likely to change if I didn’t get involved in some sort of advocacy or ambassador position. While I am still waiting to see what I can do to advocate for more support for people like me, having this attitude empowered me to feel resilient and hopeful that one day, I can help not only myself, but help other people as well.

Eventually, I circled my way back to looking at the American Heart Association’s website. I reflected on my years in elementary school doing the Kids Heart Challenge. The reason why they do this challenge every year is not only to help kids understand the importance of maintaining a healthy heart, but to also help raise funds for people living with heart disease. They do this by not only having programs that include kids with heart disease, but also allowing kids without heart disease to get involved as well. To me, bringing awareness to a cause also includes getting the involvement of the general public. Looking back on the Kids Heart Challenge, I see it as an important part of bringing support to people with heart disease.

Today, I still have symptoms. I still struggle to get through the day sometimes. I have to take breaks during swim practice when I get tired. I am still hoping that my cardiologist will help me find a solution to reduce the amount of symptoms I am having. But I still feel empowered knowing that I have something valuable to contribute to this world, and to me, that’s all I really needed anyway.

As for the heart surgery, we’ll cross that bridge when we get there.