What IS Long QT anyway?

The Long QT gene which runs in my family is Long QT syndrome Type 3.  It is the kind which almost always happens when one is resting or sleeping if it’s going to cause problems or death.  Sometimes a person has the gene and it never causes death.  Sometimes, a person may have many episodes and heart problems.  

In my case, I have the gene, but I have been asymptomatic my whole life.  I haven’t experienced prior problems with it, and was surprised that I tested positive as having it.  Just because you are asymptomatic, also doesn’t mean that you couldn’t die from it.  Sometimes the first symptom you ever have is death.  I know that sounds terrible, but it is true.  There are several different variations of Long QT which have been identified.  A few years ago we went to Dr. Michael Ackerman at Mayo Clinic, who is a world wide specialist in Long QT and published author of many books and articles.  He said that when one has the gene, like I do, there is a 50/50 chance of one or both of your children having it.  Some of my relatives have been tested.


We found out recently, that my second cousin has also doctored with Dr. Ackerman at Mayo.  Many of her family members have it.  Some of them have died, some do not have it, some have it and have chosen to get a defibrillator, and some have taken a medicine for it.  I just recently learned about this medicine.


Also in my case, Dr. Ackerman said my “numbers”, on the Long QT interval, did not warrant getting a defibrillator.  When we talked to Dr. Ackerman a few years ago, I understood there weren’t any medicines which help.  So maybe this is a very recent discovery.  So, we’ll keep investigating.


Below is a clip off from the Mayo Clinic website.  It very briefly describes what Long QT syndrome actually is.  If you want more information, you can go their website.  http://www.mayoclinic.com/health/long-qt-syndrome/DS00434


By Mayo Clinic staff

Long QT syndrome (LQTS) is a heart rhythm disorder that can potentially cause fast, chaotic heartbeats. These rapid heartbeats may trigger a sudden fainting spell or seizure. In some cases, your heart may beat erratically for so long that it can cause sudden death.
You can be born with a genetic mutation that puts you at risk of long QT syndrome. In addition, certain medications and medical conditions may cause long QT syndrome.
Long QT syndrome is treatable. You may need to limit your physical activity, avoid medications known to cause prolonged Q-T intervals or take medications to prevent a chaotic heart rhythm. Some people with long QT syndrome need surgery or an implantable device

About Myrna Folkert

Myrna is an author who desires to use her gifts to glorify God. She's created this blog to tell stories of her childhood, musings about life, motherless daughters, grief and loss, faith in God, her family history, and facts about the Long QT syndrome. She also has a hearing condition called Tinnitus. Doing interviews with motherless daughters like herself are of great interest. Join in discussions by following this blog and commenting. She would love to hear your stories about life. Myrna is a Christ follower, wife, mother, sister, friend, aunt, and cousin. She was an elementary school teacher for 27 years; now works in her church, and a few other volunteer activities such as Hospice doing "Life Reviews" and Vigils. Myrna loves to read, write, listen to music, go to concerts, and take pictures. Her favorite pastime is boating with her husband near the beautiful shores of West Michigan.
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