Can you tell me a little bit about your SADS journey – from diagnosis to where you are today?

For me, the discovery of Brugada Syndrome was not triggered by any symptoms. My mother passed away from an unknown cardiac event. I knew she’d gone to the cardiologist many times, complaining about symptoms like tightness in her chest. They never found anything suspicious on her EKGs.

After she passed away, it was recommended to me by my friends and family to get checked out by a particular type of cardiologist – a specialist known as an Electrophysiologist (EP). There happened to be an electrophysiologist (EP) in Buffalo, and explained my situation. Because he was an EP, and knew a fair amount about Brugada Syndrome, he had a suspicion. He took a baseline EKG, and then took a second EKG, this time placing the leads in a specific position that is more likely to detect a Brugada EKG pattern, and he observed what is known as a typical Brugada Syndrome Type 1 “saddleback” pattern (a coved ST-segment elevation). His recommendation was to undergo an EP study, and if it was positive then the next step would be to implant an ICD. The EP study was positive, and so as agreed upon prior, an ICD was implanted for primary prevention.

What is your experience with your ICD?

I’m part of the ICD Support Group, and I’ve noticed that unfortunately there are others whose experience after the procedure has been one of many unanswered questions because they haven’t been given much information – anecdotally it seems that they’ve been assured by their provider that they need it, but aren’t given many details about life afterwards. Because of my professional background, I’m fortunate that I know more than most about the operation and diagnostics of my device. My experience overall has been good; I’ve been asymptomatic and never had an event since receiving my first ICD in 2011. The first device battery lasted 11 years; I’m on my second, and know what to expect.

What advice would you give to someone who was newly diagnosed with a SADS condition?

Use what’s available to you, as a non-clinician, to educate yourself about your condition – so that when you engage with healthcare professionals, you can ask them questions in ways that will get you the answers you’re looking for. When I was first diagnosed in 2011, the internet was not rife with as much information about both Brugada Syndrome and ICDs in general; whereas now there are many tools and reliable sources of information available now. Sites like the Mayo Clinic and Cleveland Clinic pages are good sources of information designed for non-clinicians and their families.

Nobody chooses to have Brugada Syndrome, but now that you have it, it’s going to be a part of your life forever, so take time to learn everything you can about it. I notice that sometimes people feel like life comes to a standstill after their diagnosis, because of fear of the unknown; that’s why it’s so important to learn everything you can, so you can keep building the life you want to lead.