In college, Alex experienced her first symptom of a serious heart condition – which was dismissed at the time as a panic attack. It’s now been seven years since her diagnosis of ARVC, and she’s joining the SADS Foundation’s ACM Steering Committee to help others who are going through a similar journey.

Growing up, Alex was very active – she played ice hockey and lifted weights. “Sports and physical activity were a big part of my identity,” she says.

After experiencing shortness of breath and a racing heart in college – which was diagnosed as a panic attack – Alex was sent to a cardiologist. While the cardiologist did see PVCs (pre-ventricular contractions, an erratic heart rhythm) on her EKG, he said it didn’t concern him. She also had an inverted T wave – a classic sign of ACM – but her cardiologist said “that’s weird – but you see it sometimes.”

Two years later, Alex experienced Sudden Cardiac Arrest (SCA) while conducting research for her master’s degree in Belgium. Doctors were unable to figure out why Alex – who was young and otherwise healthy – had suddenly collapsed. After spending a month in the hospital in Belgium with a fungal infection she’d contracted during her hospital stay for her SCA, she followed up with a cardiologist, who thought her SCA was a freak accident – but said that she could do genetic testing “if she really wanted.”

“I wasn’t given any instructions or restrictions – just had an ICD implanted,” she says.

That fall, Alex returned to Belgium – where she experienced two shocks from her ICD while in the gym. An electrophysiologist in Belgium who studied with the Brugada brothers – the scientists who discovered Brugada Syndrome – took over Alex’s case, and Alex decided to do genetic testing. Her testing came back with a PKP2 variant, a hallmark of ARVC.

Doctors started Alex on medication, but beta blockers came with intense side effects; because she couldn’t take them, she was started on sodium channel blockers and restricted from any physical activity. That summer, she experienced multiple episodes of SVT, another type of irregular heart rhythm, and underwent an endocardial ablation. For eight months, things were back on track with Alex’s heart; she went to Tanzania and Spain to finish her master’s research on mosquitos and malaria.

In June of 2020, Alex experienced six ICD shocks while stepping out of the shower. A few days later, she experienced 25 shocks. “It was an incredibly traumatic experience,” she says. “I spent a month in the hospital, and was almost admitted to psych due to the trauma from the shocks – I was terrified of the shower, since that’s where both events happened.”

In the fall of 2020, Alex had an epicardial ablation, and she received a dual pacemaker/ICD in March of the following year. “During that waiting period, I was in the ER about 30 times,” she says.

In September of 2021, Alex had another ablation. “This ablation was eight hours of surgery,” she says, “and then I experienced tachycardia afterwards, which required a shock. I had another eight-hour ablation after that shock. The four ablations I’ve now had, in such a short period of time, kickstarted heart failure for me.”

One of the main challenges Alex has faced is the anxiety and mental health challenges that accompany a diagnosis like ARVC. “I went through a big identity crisis after the ICD shocks,” she says. “I didn’t recognize myself in the mirror. I think the physical changes can be especially hard on women; I felt like my body went through a second puberty during this diagnosis. I felt like I was in someone else’s body – a body that wasn’t able to do the things that it used to, a body that felt like it was trying to kill me every single day.”

Alex also had to make a career shift. “I completed my master’s degree, but I’d gone to school to become a field scientist – to go alone into the field in remote places across the globe,” she says. “I had to pivot to policy work.”

What’s helped Alex the most is being around friends and family who value her, plus connecting with mental health professionals and undergoing treatments like EMDR.

“Even though I was questioning who am I without my previous identity?, the people who knew me before and after my diagnosis – my friends and family – their perception of me didn’t change,” she says. “They didn’t care if I was in great shape, or couldn’t participate in certain activities. That made me realize that I could make the mental shift, too.”

Connecting with the Johns Hopkins ARVC Program also helped Alex. “They were able to tell me where I truly was with my heart, and that gave me a lot of confidence,” she says. “Thanks to resources like SADS and Johns Hopkins, I’m living like a normal person again. It took seven years – seven since my diagnosis, and five years since my ICD shocks started.”

Alex is now a member of our ARVC Steering Committee, and helps us advance science for others with her condition.