I Have Andersen Tawil Syndrome

A Andersen Tawil Syndrome anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Andersen Tawil Syndrome. You're not alone. 13 People

    First Paralysis Episode While In Us Navy

    I had my first "episode" as I like to call them while I was serving on board an aircraft carrier in the US Navy. Lower and upper body weakness. The medical staff had no idea what was wrong with me. That was in 1998, I was finally diagnosed in 2001. I have learned over the years...
    robmil94 robmil94
    36-40, M
    Aug 2, 2012

    My Genetic Revelation

    I was diagnosed with prolonged QT Syndrome when I was 10 after I had a cardiac arrest. I found out that it was actually Andersen-Tawil syndrome when I was about 20 thru genetic testing. I have a defibrillator/pacemaker inserted into my chest to keep my heart regular which was...
    BonniC BonniC
    22-25
    1 Response Sep 27, 2012

    I am thirty six years old,

    and was just genetically diagnosed with ATS. I'll share my health history, so people can compare. I was born addicted to drugs. At six months old I got spinal meningitis and flat lined. They had done a spinal tap. Many of my organs are on the wrong side. I had horrible...
    ParagonsDawn ParagonsDawn
    36-40, F
    2 Responses Jun 11, 2014

    I'm Only 15 Years Old...

    I'm only 15 years old and have andersen tawil syndome. My activities are very limited and I had to get an ICD put in. I was diagnosed when I was 13 years old because I fainted during a karate ternament. They first thought I had a decease that was called cadiolamengeric polymorfic...
    rachaelbrisbin rachaelbrisbin
    13-15, F
    7 Responses Feb 17, 2011

    Phyllis

    My daughter and I been confirm that we both have Andersen_tawil syndrome. It took 4 months to get the testisting back. My daugther has arrhyyhmia since the age 8yrs old on med. I had my since the age of 16. no syndrome then. My syndrome started in June of 2011. I was ligthed...
    pcstein pcstein
    51-55
    2 Responses Jan 15, 2012

    I do not have ATS but my 13 y/o daughter does.

    She was originally diagnosed w/ a heart condition known as Polymyphoric Preventricular Tachycardia at that time she was in softball, gymnastics, and cheer, we were told to stop all of her activities at that time. After a while she began to complain of her legs "giving out" and...
    mindy918 mindy918
    36-40, F
    Aug 31, 2015

    I was diagnosed at the age of 17.

    Up until that point i spent my life with the perallasis and docters not knowing what it was. They thought i had a type od muscular distrophy and i went through alot of pinful tests. When i was 17 i had yet another muscle byopsy done on my leg, they put me to sleep to do it and...
    tabitha35 tabitha35
    36-40, F
    Mar 19, 2014

    I Have Andersen Tawil Also

    I am in the process of being officially diagnosed with andersen tawil my self..it is my opinion that at least 20 members of my extended family have this condition also. I am 53 years old have muscle weakness and abortive weakness attacks (hypokalemia partial paralysis) i will be...
    kattsqueen kattsqueen
    51-55
    1 Response Nov 3, 2009

    My Daughter Has This Syndrome

    We were informed a few months ago that my daughter has this syndrome, but she doesnt have the typical form of this syndrome hers is 10 times worse than the population that has it. We were told she is the first reported to have such a serious case of Andersen and Tawil- so the...
    denarand denarand
    36-40
    3 Responses Aug 9, 2008
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