Stories from the ARVD/ARVC community
I guess it all started when my mom was diagnosed with hypertrophic cardiomyopathy in early 2012. I was 32 at the time. Her cardiologist wanted to do genetic testing on my sister and me, and both tests came back negative — great! Except my echo (echocardiogram) and EKG (electrocardiogram) showed I was having a lot […]
I 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 […]
February 2016 was my first memorable arrhythmic encounter and the beginning of my journey to diagnosis. It felt like my heart just sank — the room was starting to get dark and my ears started ringing. I thought to myself, “I’m going to pass out, this is so embarrassing.” This was during a cycling class […]
Courtney graduated from college on May 7, 2016, with a degree and with the diagnosis of Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC). She was diagnosed after losing her 17-year-old brother Jake to the same condition. Both she and her brother showed no signs or symptoms, had no family history, were living lives full of competitive athletics […]
I have now been living longer with the arrhythmogenic right ventricular dysplasia (AVRC) diagnosis than without it. I am 48 years old. When I was 20 years old, I collapsed during a rowing race and nearly died. At least six times since then I have cheated death. I am now onto my third implantable cardioverter […]
“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 […]
I was first diagnosed with ARVD in 2004, at age 50, after experiencing ventricular tachycardia after a cardiac arrest. I was put on medication and advised to get an implantable cardioverter defibrillator (ICD). In an effort to avoid an ICD, I had an ablation that, although not fully successful, lessened the rate of tachycardia. Against […]
There was a little girl and she had a little curl; right in the middle of her forehead. When she was good, she was very, very good; and when she was bad she was horrid. My story began almost three years ago when I was 34. I had always been healthy, with no issues with […]