I Have Kearns Sayre Syndrome

A Kearns Sayre Syndrome anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Kearns Sayre Syndrome. You're not alone. 23 People

    Issues With Eating?

    I am 38, living in Southern California and was diagnosed with KSS 12 years ago. I have eye paralysis, ptosis and very weak muscles. I try and walk 3 miles daily with my dog and go to yoga and pilates classes to build my strength, which is difficult. Lately, I'm having issues...
    freddiaschaffer freddiaschaffer
    4 Responses Feb 27, 2013

    How To Live With Kearns

    Hi my names Shaz I have a twenty year old son who was diagnosed with kearns about twelve year now don't really know an awful lot about this condition except its the most heart breaking condition joining I'm my eyes my son dose not know the full extent of this condition he would...
    Shazgreet Shazgreet
    18-21, F
    2 Responses Dec 15, 2012


    I have kss i am 38 years old i live in austraila i am allways sleepy and have sore knees most of the time i use a walking stick in the afternoon as my knees get very sore bye then. i have 3girls i am very woryed thay may have this as well.
    Roslyn74 Roslyn74
    36-40, F
    2 Responses Oct 7, 2012

    39 Year Old Kearns Sayre Syndrome Female

    just looking to share stories..... anybody out there?
    diannamaria diannamaria
    2 Responses Jun 21, 2013

    I has KSS,I was diagnosed this April

    after all kinds of different doctors.as of late,I have sour muscles in my shoulders and lower back,my eyes are bothersome, like their swollen and itch. I'm on a new medication for the tremor I have which makes things difficult.i hope it will help. I was hoping to talk to others...
    Jenholand Jenholand
    36-40, F
    Nov 23, 2015

    My Brother Has Kearns Sayre

     My brother was diagnosed about 10 years ago, while he was in high school.  He has had some health problems, most severely being that he has a pace maker, but for the most part his issues are psychological.  He is convinced he is going to die, at least that is what he...
    hellvis1977 hellvis1977
    31-35, M
    5 Responses Nov 15, 2011

    Hi um in currently 17

    and had kss for 6 years now. I have hearing aids pace maker, eye movement problens and sum other things Im wondering if everyone with kss hav different symptoms that vary amongst different ppl or the same? I read that dementia is a possible symptom, but i show no sighs of it...
    eddie199805 eddie199805
    18-21, M
    1 Response Sep 10, 2015

    My name is Tiffani and I am looking

    for another person with KSS for my brother, Keith. He is 42 now and was diagnosed at 24. He started showing signs in his late teens, first by losing his hearing, having days where his motor skills went out of whack, losing his ability to drive, eye sight waning and other things...
    Tiffanimorgan Tiffanimorgan
    22-25, F
    Feb 12, 2016
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