Can you tell me a little bit about your family’s ARVC story?
The first time our family heard of ARVC was in 2018 when my son, Greg – after the first of five Sudden Cardiac Arrests he’d experience in his lifetime – received the diagnosis. Seventeen years earlier, my wife, Jackie – Greg’s mother – passed away without warning from a Sudden Cardiac Arrest. We had no real explanation or suggestion of a cause for her death at that time.
Since Greg’s diagnosis in 2018, my other son, Ben, has also been diagnosed with ARVC through genetic testing, plus my brothers-in-law and several nieces and nephews.
What are some of the biggest challenges your family has faced after diagnosis?
The biggest challenge for our family – and for other families we’ve connected with since then – is finding the most accurate and complete care team to take care of our needs. We’re fortunate to be connected to the leading ARVC center in Canada, but many other families don’t have that opportunity. There’s a disparity in information, consistency, and getting connected with well-informed care teams in both Canada and the United States.
What advice would you give to someone who was newly diagnosed with ARVC?
Reach out to places like SADS to help find support. Also, medically, get a second or third opinion if you’re not confident with what you’re being told. I wish I had pushed harder for answers; if your doctors aren’t going in the direction you want, or are not able to fully answer your questions, don’t be afraid to look for other practitioners.
What is the number one thing you want to convey to the FDA during the PFDD meeting about ARVC?
I would like to convey the importance of consistent, up-to-date messaging for everyone impacted by this condition. Lots of people can find answers and direction online, but it’s not always effective, appropriate, or accurate. It’s very important for clinics across the world to be as informed as possible about this condition, and have a network in place that directs patients to the best support. There’s huge gaps in this process, from my experience.
Learn more about Adam and his bike ride across Canada to raise awareness about ARVC here.