In the Spring of 2016, I was diagnosed with a rare, genetic heart disease called ARVC (Arrhythmogenic Right Ventricular Cardiomyopathy). This is a disease of the heart where your heart muscle is exchanged with fat and scar tissue. This disrupts the heart rhythm, causing life-threatening arrhythmias.
Unfortunately, this is one of the few diseases where exercise is not only not recommended but has been found to increase the progression of the disease. In extreme cases, the patient will require a heart transplant.
As an endurance coach and athlete, this was a devastating blow which took me two years to overcome. Both mentally and physically, it was the most difficult two years of my life.
Today, I have found a balance between working as a coach, training my clients, and continuing to follow an exercise program for myself. Although this balance is in continuous flux as I am reminded daily that I need to listen to my body. The slogan “mind over matter” no longer works for me. If I don’t listen, my body will simply shut down.
To help other athletes deal with their diagnosis, myself and Claire MacEwing have started a support group named AHAA, Athletes Helping Athletes with Arrhythmia. If you are an athlete who has recently been diagnosed and or you know of an athlete who has and could use some help, please email us. We are here to help each other realize that we can live active and happy lives, even with heart disease.