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This blog is for you. We hear your questions posted on other forums and can’t always answer them. So let’s hear them again. What keeps you up at night? While this blog is not intended to provide individualized medical advice and cannot be a substitute for a relationship with your care provider, it can help fill a void we sense is clearly there. The one that only you feel when you are left to sort this out. You aren’t alone. Let’s do this together. I’ll start.

Recent conversation:

Sam (my 11 year old with LQTS2) “Why can’t I have a cool medic alert bracelet that looks more like a fitbit like my friend David. I hate wearing this dumb thing on my wrist because it clinks on the desk every time I go to write.”

Logan (his 8 year old brother with LQTS2 following suit) “Sam – change it to your left wrist like I did and if it looks like a fitbit when you pass out and need the AED on your way to david’s riding your bike all alone no one will know you have long QT because they think you have a fitbit and NOT a medic alert.”

Brilliantly stated.

Yes, get a medic alert. And it should look like a medic alert, not some cool piece of jewelry, it is universally known entity in the medical world. Trust me. A bracelet is better than a necklace.

What should it say?

Diagnosis simply stated, medications and devices, nothing too fancy.

What does Logan’s say?

Long QT syndrome

takes beta blocker