When I was 14, I starting blacking out and have seizure-like activity, and we saw different specialists, but they couldn’t figure out what was causing the seizures. They did a bunch of different tests – MRIs and CAT scans – which all came back normal. Because of my age, they didn’t think to look at my heart.

The doctor I was seeing just happened to put me on a medication that had an anti-arrhythmia in it. That kept my heart under control when I took it properly, but because I was a teenager, I didn’t always take my medication like I was supposed to. And when I missed my medication, I would have episodes.

I got pregnant at 19 with my oldest child, and because the medication was dangerous for me to take when I was pregnant, I came off of it. And I had another episode. Usually it would be about a year between episodes, but this time, as I was coming out of it, I felt like I was going to have another one on the way to the ER. As soon as I got hooked up in the ER, I asked the nurse not to leave me – I knew something was going to happen. She said she was going to get the doctor, and as soon as she closed the curtain, I coded.

From there, they figured out that I had Long QT Syndrome. Two days after being diagnosed, I was scheduled to have an ICD implanted. I was in the ICU for eight days recovering from the cardiac arrest and the surgery. But after that, I’ve had a pretty normal life. My medication and device have kept things under control. Both of my kids have been tested for it, and they’re being monitored by a doctor.

Right after my diagnosis, I was depressed and anxious. I was worried that it was going to happen again, and worried about my children. It was always constant worry hanging over me. But slowly I learned to change my mindset and not sit in the fear, because it will consume you. You have to find a way to live with the fact that you could have another episode – while still living your life.

If you have symptoms, don’t brush it off and think it’s nothing, because you just don’t know. And a lot of times, with LQTS, people don’t know they have it until they have a cardiac arrest. Even following up on minor symptoms could change your life. And don’t ignore these symptoms in children, either. Because of my age, when I first had episodes, they never looked at my heart. If they had covered all possibilities I could have been prescribed proper medication, had testing done and maybe prevented cardiac arrest while pregnant or needing an AICD. While it may be possible I would end up having that happen anyway, early diagnosis and treatment can make a world of difference.

If you’ve just been diagnosed, my advice is to find a community – people who are going through the same thing. It makes it easy to relate to others, and talk with people who’ve been through it.