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Can you tell me a little bit about your family’s SADS journey?

When I was little, we knew something was wrong, but we didn’t know what it was. At eight, I was diagnosed with LQTS. At 10, I had a cardiac arrest jumping over a fence. After that, my mom has been really active helping the community – placing AEDs in schools, grocery stores, and churches. She’s been working with the SADS Foundation, and she loves it – it’s a great way for her to channel her passion to help others.

What was the greatest obstacle to treatment that your family faced?

It did take me a while to be diagnosed, which was unfortunate, because the QT interval can be affected by so many things. Luckily I found out relatively early from my pediatrician.

A lot of people aren’t aware of how many medications affect the QT interval – common medications like Zofran. There are lots of medications to watch out for. We have Credible Meds on our phone and if there’s anything we’re prescribed, we check it against the app. Doctors have attempted to prescribe things to us that are on the list, but luckily we’ve caught it.

What advice would you give to others in the same situation?

Educate yourself – you are your best advocate for yourself and your child. Doctors might not check the list – they’re very busy with other patients; or they may just not be up to date on what causes QT prolongation. It’s always better to be safe than sorry.

How has the SADS Foundation helped your family along their journey?

The SADS Foundation is an amazing source of education, with so many resources. You can find others in similar situations, so you don’t feel so isolated and alone, and they can get you in contact with lots of different doctors that specialize in SADS conditions.