Stephanie and one of her daughters (who also has LQTS)

Back in 1992, I was diagnosed with a condition called Long QT Heart Syndrome. Doctors discovered it through medication interactions, which caused a cardiac arrest. Doctors didn’t know as much about the condition back then, and I was actually in a coma for a couple of days before they thought to look for LQTS. At that time, I was told that I had tons of restrictions – which came from a lack of knowledge on the doctor’s part.

Unfortunately for my family, we didn’t know enough about LQTS to know it was genetic. At that point, we just thought it was medication-induced. And in September of 1994, my grandmother passed away from LQTS after being given a QT-prolonging medication. We didn’t know she had a SADS condition. After that, we had family genetic testing done. After I had my three daughters, we had their cord blood tested, and one of my three daughters also has LQTS.

One of the biggest challenges I faced after diagnosis was the lack of knowledge. To be 18 years old – a senior in high school – and to have this scary heart condition, and then to be told you can’t do sports, and have to be careful with every single little thing you do – that’s really hard. The following August, I went to college three hours away, with doctors that weren’t my diagnosing doctors, and that was hard too.

If you’ve just been diagnosed, I’d encourage you to read about the condition, but also take anything you read with a grain of salt, because 90% of online stuff is going to represent the worst-case scenario. It’s scary enough to get this diagnosis without reading worst-case scenarios! You’ve got to find people and places that have good information, and find facts more than emotion, which is really hard – because when you’re first diagnosed, it’s all emotion. Get involved with your heart community, because that’s where you’re going to find the people that will help you find good information.

The SADS Foundation gave my family the knowledge that my LQTS might be genetic and not just induced by medications. And then it helped us after my grandmother passed away to start asking questions. Without SADS, I also would never have known about CredibleMeds. When my daughter (who’s now 14 years old) got her first phone, the very first thing I downloaded for her was the CredibleMeds app.

And when we went to the SADS International Family Conference in Ann Arbor, by talking with other parents, doctors, and SADS staff, I discovered that I really should have a 504 plan in place for my daughter – a medical action plan. Talking with other parents helped me learn that it was good to advocate and be assertive, and I pushed her school to get a 504 plan in place. For any parent, that helps so much with peace of mind.

Over the last two years, the SADS Foundation’s SADS Live program with Dr. Michael Ackerman have been phenomenal. I’ve said to many people, with what other condition can you get access to one of the world’s preeminent experts, hear what they’re saying, and ask them your questions as they come up? That’s huge.