It Starts With Us

I am passionate about congenital heart disease. Why? I have a CHD. I have a nephew who also had a CHD who passed away very unexpectedly at the age of 20. I work professionally with children and young adults who have CHD. I am Committee Chair for Nashville’s first Congenital Heart Walk. I am a blogger for ACHA. My life is filled with all things CHD and I love it. I am, however, not my CHD.

I don’t wake up every day thinking about my CHD and how it impacts my life except for that one moment I take my Coumadin. Although I’m not sure if I’ll ever be able to carry a pregnancy, I don’t dwell on it every day. I enjoy kayaking, bonfires, and the occasional glass of wine. I have a wonderful husband, a super cute shih tzu named Luke and a cuddly cat named Hallie. We own a beautiful home and love to entertain our amazing friends and family.

You may be asking, “What’s your point?” and understandably so. The answer is simple. As CHD patients, especially adults, we can become so focused on being more than our CHD that we forget about the impact CHD has on those around us. It is still the #1 birth defect in the world. Research is still significantly underfunded. More CHD patients are reaching adulthood, which is wonderful, but we still have so much more to discover!

Have you ever walked into a restaurant or seen a television commercial about another cause and wondered why don’t we ever see anything for CHD? “What about us?” we ask.

This past year has really made me reflect on this to a great extent. And the solution is simple – for others to advocate for us, we have to first advocate for ourselves. We have to be passionate and share that passion with others. We have to be involved in CHD-related activities. We have to participate in advocacy and research efforts.

And sometimes, we have to be the one to lead those efforts. You know that saying, “The squeaky wheel gets the grease?” We have to be that squeaky wheel to enact change and have our voices heard loud and clear!

So, today, I want to challenge you to get out and get involved if you’re not already. Find a local CHD group to involve yourself with and share your story. Participate in a Congenital Heart Walk or start one in your city. Volunteer at your local children’s hospital with CHD patients. Attend conferences about the latest research or serve as an advocate on Capitol Hill. Become involved with ACHA. Share your story when the opportunity presents itself.

So, while we are not our CHD, it is a beautiful part of who we are and that is something to share with others so we can change tomorrow for ourselves, and those 1 in 100 born each and every day.