Kellie Moore, 30, has Long QT Syndrome Type 2. She was diagnosed during childhood, and she is currently taking a beta blocker.

That’s me, hooked up to a Holter monitor after my most recent cardiology appointment!

What’s your diagnosis story? How did you find out you have this condition?

We first found out about Long QT Syndrome because my grandma had a couple cardiac episodes. My mom and I were then also diagnosed. I was around 5 years old, and I don’t remember being scared in any way—it was just part of life. When I was a little older, we got genetic testing done, and that confirmed the diagnosis.

What has been the biggest challenge you’ve faced in living with your diagnosis?

Because LQTS has been part of my life since I was a child, it’s always felt “normal” to me. However, I did face one big challenge in high school P.E. My doctor wanted me to be excused from P.E. class, but the principal wouldn’t allow it. I took the class with the understanding that I needed to listen to my body. I lived an active life, but I also knew my limits. When the class did the timed mile, I didn’t feel comfortable pushing myself to the degree that other students did, so I didn’t make it in the time we were supposed to aim for. Because of that, my grade dropped. So, my mom and I took action. We worked to get the P.E. grading policy changed to Pass/Fail instead of a letter grade. The school also created a new class, Adaptive P.E., so people could work within the physical boundaries that were best for them individually. What started as a frustrating challenge led to an empowering change.

What is one positive thing that has come out of your diagnosis?

I’ve learned a lot about being secure in who I am—Long QT Syndrome is part of me, but it does not define me. I’ve also learned to appreciate life more fully.

What encouragement or advice would you give to someone who has just been diagnosed with your condition?

First, know that LQTS is not a death sentence—you can still live a full, beautiful life. I find that it’s helpful to have a go-to explanation of LQTS. That way, when I’m in a situation where I need to talk about it with others, I can do so with ease and confidence. Own it!

What does your day-to-day life look like? 

I’m a stay-at-home mom with a 1-year-old daughter and another baby on the way. (My daughter also has Long QT Syndrome.) We go for lots of walks in the park, and we enjoy going to events at our local library. I do a lot of cooking and baking, as well as other projects around the house. Outside of family, my biggest passion is writing, so I try to fit that in whenever I can—including writing for the SADS Channel!

What are your favorite hobbies and activities?

Writing, reading, baking, scrapbooking, yoga

Want to be featured in the SADS Spotlight? Share your story by answering a few short questions. If you have a longer story to tell, or if you’d like to write about a specific topic, check out our guidelines for writers