I’ve known about my Long QT type 1 diagnosis for as long as I can remember. My mom, only after having my first sibling, Calvin, prematurely and running extra health tests, found out our genetic line had it. She then passed down the trait to her next two children, Creek and yours truly. The journey has been very consistent and far easier than I expected as the confused child I was. I’m extremely grateful to have only been diagnosed with type 1, as symptoms have been completely absent from my life. Throughout the years, our cardiologist, Dr Michael Shaffer, has been an outstanding support, leaving us feeling more relaxed and accepting of our condition with each visit. Nowadays, I’m very mindful of this condition, but still allow myself to thrive and move forward, rather than dwelling on this silly imperfection.

Growing up with lots of athletic friends, it’s been challenging to sometimes sacrifice my participation from high-adrenaline activities such as track or tackle football. It was always a bummer to see my pals play without me in certain activities, and it took a toll on my mental health growing up. It upset me as kid, but as I grew older and began to better understand our cardiologist’s advice, I felt confident and unfazed by my limitations, as I was able to recognize they weren’t as menacing as I made them out to be. For me, it was very important to not overthink my condition. I was able to find happiness in a huge number of hobbies, such as hiking, camping, and I even became the top doubles player for my schools varsity tennis team by my senior year. Another challenge, although simple, was remembering to take my beta-blocker medication. As a young child, my mom was very good at getting me to take it, but as I become more independent, I realized just how easy it is to overlook when living a SADS life without symptoms. Even though I can sometimes forget, I know it’s crucial to stay consistent, as Long QT is something that can bite you when you least expect it.

My mother found the SADS Foundation to be very supportive since my brother was diagnosed in 1997. SADS list of “Drugs to Avoid for LQTS” has been the single most useful resource for our family over the years. It has saved each of us from taking even the most simple of cold medications, which are entirely contradicted by our condition. Throughout my whole life, SADS has made me feel like I’m not alone and a part of a greater resilient community.

It’s very important to always stay mindful and to never overthink your condition. When you dwell over the unknown or fearful qualities of the condition, it can cloud your mind, leaving you to feel alone, scared, and stressed out. Instead, it’s better to focus on the things you can do to move forward, rather than worrying about your limitations. Another thing to keep in mind are the incredible advances cardiologists have made around the world. It’s very important to retain trust and support of your cardiologist, as they work tirelessly to help make our lives safer.