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

It started with stomach issues which led me to the ER, and they did an EKG there. And that’s when all this started because they saw type one Brugada pattern. 

I didn’t have any family history of anyone going into cardiac arrests or anything like that. But was referred to a cardiologist and eventually referred to an EP.

I had a delta wave which is for Wolff-Parkinson White. Shortly after that consultation, I had an ablation for it and we thought everything was fine. But then I also saw a cardiologist for dysautonomia/POTS symptoms. That’s when the pattern for the Brugada pattern came back.

They initially thought it might just be nothing, and to go back to my doctor. They also told me it wasn’t normal to have that, especially multiple times. 

And so I had a couple of visits with him. And then they did the genetic testing because there wasn’t a lot of information to confirm it either way. 

When the results came back, it was the Brugada gene. And then my dad got tested. And he’s also positive. We also found out that my dad’s mom, my grandmother, tested positive.

We’re trying to figure out exactly where it came from, because it’s such a new thing. And then I had some more dysautonomia issues that we thought were the Brugada issues, because at that point, we didn’t really know I had it.

I ended up being admitted to the Children’s Hospital and when I ablation for Wolff- Parkinson White, that tested the top chambers on my heart. I had the same EP study for the bottom chambers. The Brugada pattern was there, but he couldn’t create something that was life threatening. So I have a loop recorder put in right now.

How has the SADS Foundation been helpful for you and your family?

I’ve enjoyed the posts from people and their stories. It’s just cool to see similar people kind of going through similar things. 

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

I guess I would say, it all sounds so scary. And for me anyway, there were nights where I was just scared to go to sleep for fear of not waking up. You have to realize those fears are valid, but you also, you can’t have them hold you back from doing things that you want to do.

Be cautious but you can’t just live in fear of what could happen, because it’ll just consume your life.

Another thing is – get a second opinion. Originally when I went to the ER, when I brought up my concerns because of dysautonomia, I was just kind of told it was anxiety. 

You know your body best. So to have someone say it’s anxiety, and that, you’re just fine doesn’t make you feel good.