I Have Goldenhar Syndrome

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

    I Have Goldenhar Syndrome

    Hi, my name is Libby and im from Arkansas. I'm 18 and I have goldenhar syndrome. My left ear was under developed and my jaw was also somewhat under developed. I had four reconstruction surgeries when I was younger, but they didn't turn out to great because of the doctor that was...
    libbylou007 libbylou007
    4 Responses Mar 30, 2012

    I Have Goldenhar Syndrome

    I have to say, I have only seen one person other than myself that had it. There was one little girl at Chucky Cheeses that I happened to notice. I went over to her and was playing with her until her parents about ran me off. I just smiled at them and pulled back my hair to show...
    beadfreak64 beadfreak64
    1 Response Nov 13, 2013

    My Life

    my name is juan 23 years old...born with goldenhar syndrom.....i was born in mexico city but according to my conditions my mom has brought me to the US for me to get the right treatment.....raised in new york i grew up with the evidence of goldenhar syndrom...i did have many...
    d1nonly d1nonly
    22-25, M
    Aug 27, 2010

    Chapter One Of My Life

    i was born on july. 16 1987 in mexico city...my mother gave birth to twins...one normal and one with GOLDENHAR SYNDROME which was me.... when i came out of my mother i did not cry or nothing...they took me away quickly because the doctors notice that i wasnt breathing well...
    d1nonly d1nonly
    22-25, M
    Aug 29, 2010

    Hello my name is johnny.

    ......i was born with goldenhar syndrome.......i was born in mexico city where doctors their said that theirs nothing they can do.....so my lovely mother cross the border to keep me alive.....a when my mom got to new York the first thing she did was to get me to the hospital...
    johnnycash4814 johnnycash4814
    26-30, M
    Dec 21, 2014

    Hello! I have Goldenhar

    but unfortunately my parents were told I had congenital atresia and microtia. After 14 surgeries as a baby, child, teenager and recently as an adult, I can relate to a bunch of you. I'm 37 years old and 2 years ago I found out during a new chiropractic appointment that my...
    khaireng khaireng
    36-40, F
    Jan 22

    I Have Goldenhar Syndrome

    Hi, my name is Tatiana and I was born with goldenhar syndrome. I do not have a left thumb and the left side of my face never fully developed. My left jaw was also not developing at the same rate as my right side jaw and I had to have surgery where a key was placed in my mouth to...
    mexicanabeibi mexicanabeibi
    22-25, F
    8 Responses Apr 23, 2011

    I Have Goldenhar Syndrome

    My name is Jo, and i was born with Goldenhar Syndrome. Although it was never diagnosed until i was an adult. I was born in 1963 and had numerous surgeries while still an infant. I had 5 skin tags removed and my mouth reshaped. I have a very small lower jaw and although i have a...
    Jogirl5 Jogirl5
    51-55, F
    2 Responses Oct 16, 2013

    It Doesn't Define Me.

    Hi, I'm 23 years old and I was born with Goldenhar Syndrome as well. I am completely deaf in my right "ear". The external cartilage of my right ear is underdeveloped, I had one skin tag near my left ear and another big skin tag near my right ear. It looked like another earlobe...
    lovelytea lovelytea
    3 Responses May 27, 2012

    Goldenhar - Anything Is Possbile

    Im 28 years of age, an i.v.f. triplet and the only one who got dealt goldenhar syndrone. Im In Australia. All my organs at present seem fine/strong, right side of my face didnt develop fully and i have had numerous operations growing up to help with speech, being able to eat...
    dunno103 dunno103
    4 Responses Jan 3, 2013

    Teens With Goldenhar

    My name is Kenna. I am 13 years old. Ever since I can remember, life has been difficult. My left ear did not develope. But other than that, I'm fine. But, not really. In this society, people judge you so harshly. My, our, syndrome is not like others. While others are mentally and...
    kendraaaaa kendraaaaa
    6 Responses Nov 15, 2012
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