During a typical morning run in August of 2022, Nathan became lightheaded and had to lie down on the sidewalk. After he was found by two other runners, he was taken to the hospital, where he was diagnosed with ARVC – and he’s joining the SADS Foundation ARVC Steering Committee to help us advance science for others with this condition.

In college, Nathan was a distance runner. He started feeling lightheaded on runs during his senior year. “I’d feel bad one day, and totally fine the next,” he says. “But I wasn’t super concerned – I thought it was just stress.”

After graduation, his doctor did bloodwork, but nothing came back as suspicious (except for slightly low iron levels). He still was feeling lightheaded, but continued to train for local races, assuming he was just anemic. In August of 2022, he was out for a typical run at 6:30 in the morning when he became lightheaded again. “One stride I was fine and the next, I went to take a breath and couldn’t get any air in my lungs. My hands immediately went cold,” he says.

He was by himself, and hadn’t brought a cell phone. He laid down on the sidewalk, trying to breathe; eventually, two other runners found him and called 911. “The medics saw that my heartrate was 250 BPM,” he says. He was shocked back into normal heart rhythm in the back of the ambulance.

At the hospital, they ruled out a heart attack with a cardiac catheterization. “I was lucky, because the cardiologist here in Charlotte really knew his stuff,” he says, “and he asked for a cardiac MRI, which showed signs of ARVC.” He had an ICD implanted the next day, and months of genetic testing revealed a rare genetic mutation.

Adjusting to his diagnosis has been difficult as a runner. “My heart is doing well, and I have been doing yoga, golf, and walks,” he says. “It’s devastating that I can’t run anymore, but my cardiologist was clear with me that I was lucky I didn’t die. That’s taken time to process.”

Nathan says that his diagnosis has given him a good perspective on life. “You never really know what someone’s going through – I look totally healthy to most people, unless they see my ICD scar,” he says.

“With ARVC, there are a lot of factors out of your control, but attitude is something you do have control over, and having a good attitude costs the same as having a bad one,” he says. “When times get challenging, I’ve benefited from leaning into all the people I know really care about me, and that has allowed my attitude to stay strong. Additionally, I have found a group of young people with ARVC through Johns Hopkins. I’m so grateful for them because they know exactly what it’s like having ARVC at a young age. Having a sense of community is a key component of coping with this diagnosis.”

For those who are newly diagnosed, Nathan wants them to know that your mental health is just as important as your physical health, and recommends taking the time to fully process your diagnosis with a therapist. “And if you’re a young person who’s experiencing similar symptoms – and all your tests are coming back negative – advocate for a doctor to look at your heart.”