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Stories from the ARVD/ARVC Community

Meet Becky

The author and her familyI was diagnosed with ARVD (arrhythmogenic right ventricular dysplasia) when I was 21 years old. I went from playing in a collegiate tennis match to having an ICD (implantable cardioverter defibrillator) implanted 24 hours later. There were clues along the way that something was wrong, but what seeming healthy 21 year old thinks they actually have a heart condition? I had to adapt quickly to my new life as I started getting shocked within four months of receiving the implant.

Since then I have been shocked 29 times, some of them shock storms. I have been shocked for many different reasons, ranging from dancing, chasing after a dog that got loose, to doing absolutely nothing at all. I quickly learned that being active in athletics was no longer even a choice for me. You do a lot of soul searching when the life you once knew gets flipped upside down. What I came to find was that I still have a life and I intend to live it to the fullest. Every day is a gift. I would be lying if I said it wasn’t tough at times.

I am now 34 years old, and within my years of knowing I have ARVD, I have had numerous surgeries. Through everything, I still pride myself with having a positive attitude. The confidence I have in the ARVD/C (ARVD/cardiomyopathy) team at Johns Hopkins plays a big part in why I remain optimistic. We are in good hands with them fighting our fight. I have met amazing people through the support groups, some I call friends. And personally, I have an amazing support system, with a brother who shares my fate and parents who attend every conference and are in the waiting room for every surgery. I have a husband who married me knowing it would be through sickness and health. In 2012 and 2014 I was blessed beyond measure with God’s greatest gift — a beautiful, healthy baby girl and then a bouncing baby boy, who have redefined the word “hope” for me. I do have a heart condition, but I also have a beautiful life.