Does anyone else have Long QT Syndrome?

Posted by meredithes @meredithes, 1 day ago

I have a heart rhythm issue called Long QT Syndrome. I don’t know anyone else with this condition and just want to put out some feelers on Mayo Connect to see if there are any others dealing with this disorder. I’m part of a research study at the University of Rochester in New York that is researching LQTS and will hopefully help discover ways to make this condition more manageable in the future. So, where are my fellow LQTSers at?

Interested in more discussions like this? Go to the Heart Rhythm Conditions Support Group.

smazz6 | @smazz6 | 17 hours ago

Hello! I also have Long QT Syndrome. I was diagnosed in 2017 and had a defibrillator implanted.
Feel free to ask me anything, I am happy to help a fellow Long QT Syndrome heart buddy. ❤️

meredithes | @meredithes | 15 hours ago

In reply to @smazz6 "Hello! I also have Long QT Syndrome. I was diagnosed in 2017 and had a defibrillator..." + (show)

Hi @smazz6! Thanks so much for responding! It’s nice to have a LQTS buddy finally.

John, Volunteer Mentor | @johnbishop | 15 hours ago

Welcome @smazz6, Happy to see that you have connected with another fellow Long QT Syndrome patient @meredithes. There is an older discussion that I'm sure some of the members are still active on Connect that you might want to scan through. If you want to see if a member is still active, just click on the profile to the left of their post and it shows the last time they were active on Connect.

-- Long QT Syndrome: Want to connect with others: https://connect.mayoclinic.org/discussion/long-qt-syndrome/

A search of Connect also lists the Mayo Clinic Newsfeed Posts which has quite a few on the Long QT topic - https://connect.mayoclinic.org/search/newsfeedposts/?search=long%20qt,

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