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Stories from the ARVD/ARVC Community

Meet Lisa

“Keep your face always toward the sunshine and the shadows will fall behind you.” – Walt Whitman.

I was diagnosed with arrhythmogenic right ventricular dysplasia (ARVD) at the age of 39. Control was my middle name. But having ARVD has been an exercise in letting go. I am learning to let go of things I never thought I could live without. I am redefining myself. I am looking for other things to love and enjoy. I am adjusting to a new normal.

I have come to understand that being vulnerable can be an amazing source of strength.

I have come to learn that we can help someone by sharing a piece of ourselves.

At the end of my story, I will declare victory over ARVD because I refuse to be its victim.

Thanks to Dr. Calkins, Dr. Tandri and their team of genetic counselors, I am fortunate to receive world-class care for this rare disease. I am grateful for the opportunity to attend the Johns Hopkins ARVD Seminar and share with others who are fighting the same battles.

Follow me at

Twitter @mybigscarredheart

Facebook – MyScarredHeart