“This whole experience completely changed my perspective on life. I think now I am easier on myself, I lean on the people I love a little more, and I don’t stress about the trivial things anymore. I take it one day at a time, although living with ARVC is hard.”

Katherine was a competitive distance runner in both high school and college. When she started racing and working out on her college team, especially towards the last year or so of college, she noticed that she was starting to feel sick on runs. “I thought at first I was having panic attacks,” says Katherine. “I would have waves of fast heart beats, get short of breath, and start feeling generally ill about a mile into every run.”

As an athlete, Katherine was well-attuned to her body – and knew something was wrong. “I kept a log of symptoms and talked to my coaches and trainers – who said I was dehydrated or fatigued, though I knew that wasn’t the problem,” she says. “I ended up going to a very small cardiology office, where they seemed skeptical of my symptoms, and didn’t do very much in terms of testing. They saw a few irregular beats but didn’t catch an actual arrhythmia episode, so they sent me on my way without any follow-up”.

Katherine quit her team a month before graduation as her symptoms got worse. After graduating, she prepared to move to Boston to start a new job. The day before her move, she experienced a syncopal episode at the beach – and went into in VT (ventricular tachycardia) for almost an hour. In the hospital, she had to be shocked twice to get her heart back into rhythm.

Katherine was diagnosed with ARVC (Arrhythmogenic Right Ventricular Cardiomyopathy) and had an S-ICD implanted. “I am very lucky that I am living in a time where so much has been discovered about ARVC and diagnosing it,” she says. “I was diagnosed relatively quickly after being admitted to the hospital, and my doctors have been very thorough and proactive in my treatment plan. I know that the scope of what we know about the disease has changed drastically in the last few decades, and that other people before me were not as lucky, and did not get answers until very late in the process.”

After her diagnosis, Katherine’s family went through cascade testing – in other words, screening potentially affected family members through genetic testing – and learned that several other people in her family also carried the genetic mutation.

What’s helped Katherine most after her diagnosis was finding community. “Talking to people my own age with the disease has been very helpful,” she says. “And finding the things I can do, instead of focusing on what I can’t.”

She also emphasizes the importance of screening athletes for potential heart conditions. “SADS conditions are rare, but these things do happen, and if athletes are complaining about strange and new symptoms – why not do some tests? I knew something was wrong, but I kept feeling like a hypochondriac. I wish it had been caught earlier in my life – and that it hadn’t been dismissed as anxiety.”

Learn more about ARVC here.