1. < Heart Rhythm Conditions

Long QT Syndrome: Want to connect with others

Posted by cheymallery @cheymallery, Jun 26, 2018

Hello! I have Long QT Syndrome and I have a defibrillator implanted in my side. Water triggered my cardiac arrest both times. I just wanted to reach out and try to connect with others who share this same condition as myself.

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

penn1023 | @penn1023 | Jul 17, 2020
In reply to @hopeful33250 "Hello to Everyone in this discussion about Long QT Syndrome. I would like to post a..." + (show)
@hopeful33250

Hello to Everyone in this discussion about Long QT Syndrome. I would like to post a link to a recent Mayo Radio broadcast about Long QT Syndrome with Michael Ackerman, M.D., a Mayo Clinic cardiologist.
https://www.youtube.com/watch?time_continue=2&v=bMMSciKsQFk&feature=emb_logo

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Recent?

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Teresa, Volunteer Mentor | @hopeful33250 | Jul 17, 2020
In reply to @penn1023 "Recent?" + (show)
@penn1023

Recent?

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@penn1023 I'm not sure who you are directing your question to. Is it @johnbishop about his daughter's procedure?

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penn1023 | @penn1023 | Jul 21, 2020

I was commenting about the video. The person posting it said it was recent. It’s nearly three years old.

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John, Volunteer Mentor | @johnbishop | Jul 21, 2020
In reply to @penn1023 "I was commenting about the video. The person posting it said it was recent. It’s nearly..." + (show)
@penn1023

I was commenting about the video. The person posting it said it was recent. It’s nearly three years old.

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@penn1023, Sigh...recent is in the eyes of the beholder and the older we are, well 3 years old is more recent than 10 years old. And it was my daughters doctor who is a really great doctor and diagnosed her long QT and helped her through a long process of different treatments.

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penn1023 | @penn1023 | Jul 21, 2020
In reply to @johnbishop "@penn1023, Sigh...recent is in the eyes of the beholder and the older we are, well 3..." + (show)
@johnbishop

@penn1023, Sigh...recent is in the eyes of the beholder and the older we are, well 3 years old is more recent than 10 years old. And it was my daughters doctor who is a really great doctor and diagnosed her long QT and helped her through a long process of different treatments.

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Ok just wanted clarification on what recent is. Now I have it.

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John, Volunteer Mentor | @johnbishop | Jul 21, 2020
In reply to @penn1023 "Ok just wanted clarification on what recent is. Now I have it." + (show)
@penn1023

Ok just wanted clarification on what recent is. Now I have it.

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I normally think of "recent" as one or two years but I'm a really old guy so sometimes I do slip up. 🙂

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mayofeb2020 | @mayofeb2020 | Jul 21, 2020
In reply to @johnbishop "I normally think of "recent" as one or two years but I'm a really old guy..." + (show)
@johnbishop

I normally think of "recent" as one or two years but I'm a really old guy so sometimes I do slip up. 🙂

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@johnbishop. Two years is recent to me, especially now. Wish I could go back in time so I can go about visiting my grandchild, lunch with my girlfriends and shopping without putting on hazmed suits, just saying...

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ashtonnorris | @ashtonnorris | Jun 1, 2021

Hi, is anyone familiar with the ANK2 gene mutation? My 2 year old and I both have it, it causes arrhythmias and LQTS4. I wear an Apple Watch to help monitor when I feel “off”. My son has other medical conditions so I am trying to learn as much as I can about it!

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Amanda Burnett | @amandaa | Jun 3, 2021
In reply to @ashtonnorris "Hi, is anyone familiar with the ANK2 gene mutation? My 2 year old and I both..." + (show)
@ashtonnorris

Hi, is anyone familiar with the ANK2 gene mutation? My 2 year old and I both have it, it causes arrhythmias and LQTS4. I wear an Apple Watch to help monitor when I feel “off”. My son has other medical conditions so I am trying to learn as much as I can about it!

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Hi @ashtonnorris and welcome to Mayo Clinic Connect. You will see that I moved your comment to a discussion about LQTS so that you could connect with members like @johnbishop, @penn1023, and @mayofeb2020 who can speak on the subject.

Here is an article that you may be interested in.
Long QT syndrome (LQTS) is a cardiovascular disorder characterized ... providing the substrate for cardiac events and fatal arrhythmias as torsades de pointes ... with a voltage-sensing domain (S1–S4) and a pore loop domain (S5–​S6) ... Loss-of-function mutations in ANK2 gene encoding the membrane ..."
Long QT syndrome – Bench to bedside - Heart Rhythm O2: https://www.heartrhythmopen.com/article/S2666-5018(21)00008-8/fulltext

Can you share with us what type of symptoms your son is having as well?

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John, Volunteer Mentor | @johnbishop | Jun 3, 2021
In reply to @ashtonnorris "Hi, is anyone familiar with the ANK2 gene mutation? My 2 year old and I both..." + (show)
@ashtonnorris

Hi, is anyone familiar with the ANK2 gene mutation? My 2 year old and I both have it, it causes arrhythmias and LQTS4. I wear an Apple Watch to help monitor when I feel “off”. My son has other medical conditions so I am trying to learn as much as I can about it!

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Hello @ashtonnorris, I would like to add my welcome to Connect along with @amandaburnett and other members. My daughter has Long QT Syndrome also. I shared her experience in an earlier post in this discussion here - https://connect.mayoclinic.org/comment/206413/. Her doctor did a Mayo Clinic Podcast that you may help you learn a little more about the condition.

Is your son currently being treated for LQTS?

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