At the time of Cassidy’s diagnosis, she was training for an Ironman. “I’d done two half-marathons, was an avid runner, and had been a competitive swimmer for twelve years,” she says. “I loved weightlifting, I worked at a gym, and I was involved in the fitness industry.”
In April of 2020, her mom, Christy, experienced a sudden bout of ventricular tachycardia (VT), an abnormal and dangerous heart rhythm. Christy was hospitalized for several weeks. Her father died suddenly at the age of fifty in his sleep due to an “enlarged heart” – and this, coupled with Christy’s VT, caused the doctors to test Christy for ACM.
Christy’s MRI and genetic testing confirmed ACM – the DSP mutation. Two months after her mother’s diagnosis, Cassidy received her genetic testing results, which were also positive – and her MRI showed severe fibrosis of the left ventricle, meaning that she, too, had ACM.
“The first real symptom of my condition was in 2023, when I walked up a flight of stairs, sat down on my boyfriend’s bed, and looked at my Apple Watch because I felt lightheaded,” she says. “It showed that my heart was beating very fast, at 210 beats per minute. I was hospitalized for three days, and later that year I had an ICD implanted after it was recommended by Dr. Hugh Calkins at Johns Hopkins.”
The recovery from her ICD surgery was a very difficult time for Cassidy. “It’s truly the worst place I’ve been in terms of my mental health,” she says. “I was receiving a device made for 90-year-olds at the age of twenty. The actual recovery was difficult as well, and I experienced a lot of anxiety and depression.”
For those with a new diagnosis, Cassidy stresses the importance of listening to your body – and to your doctors. “I have a lot of guilt about the first years of my diagnosis because I didn’t know how serious this condition was,” she says. “You can find other things you love in life besides being an athlete – like studying, going on long walks, and finding a community.”
If you’re a young person who’s recently been diagnosed with a SADS condition like ACM, Cassidy also stresses how important it is to meet others with your condition. “Get in touch with SADS,” she says. “The community of young people I met at the SADS conference last year changed my life. It helped me make decision to get the ICD – it’s really crucial to meet others who are experiencing and struggling with the same things as you are.”
Today, Cassidy is a senior at the University of Arizona, where she’s studying physiology and medical sciences. In the fall, she will be attending medical school at the University of Arizona, and is interested in working in family medicine or geriatrics.