I Have Duane Syndrome

Duane Syndrome anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Duane Syndrome. You're not alone. 122 People

    Duane's Syndrome As A Result Of Prematurity

    My three year old son has Duane's Syndrome - type 1, in his right eye (which I understand is slightly unusual - usually it's the left eye). He was a premature baby, and also was growth-restricted, which means he wasn't growing properly in the womb. He was only 3 pounds at birth...
    eliza333 eliza333
    46-50, M
    1 Response Nov 9, 2013

    I'M The Self Conscious, Cross Eyed Freak.

    Ever since I started school, I've been bullied for having Duane Syndrome. It's calmed down now that I'm 15 and that people have started to mature, but it hurts. When I was in around 8, I can remember people calling me a 'cross eyed freak' and '**** eyed' or one time, I turned...
    lalala123455 lalala123455
    18-21, F
    2 Responses Jun 13, 2013

    Duane Syndrome In Both Eyes

    Hey everyone! My name is Brian and I was diagnosed with Duane Syndrome in both of my eyes at age 2. I am unable to abduct (turn outwards) in with both of my eyes! DS is a very rare condition to begin with, and 99% of the time it affects only one eye...so I guess I'm lucky? DS...
    BrianWr BrianWr
    18-21
    8 Responses Mar 13, 2012

    Havent Had Treatment Since 6yrs Old

    i last had my second surgry when i was 6,i am now 31 an my eye sight is failing me.anyone know what happens next or how i go about getting medical help, i fear i am going blind.
    jessicabiggins jessicabiggins
    31-35, F
    1 Response Oct 8, 2013

    Duane Syndrome

    Yh I have duane syndrome in my left eye I'm 13 btw. I don't get double vision or anything. I get friends am quite popular so I doesn't really matter much. I love sport and studying, hence my popularity. It can make you quite shy but you will overcome that. I'm a boy. And...
    Rambo8 Rambo8
    13-15, M
    Sep 4, 2013

    My name is Kay and I have type 3 Duane's

    Syndrome in my left eye. I am 39 years old and was diagnosed in my late 20's. My story is a very sad one, but I thought I could share so if anyone out there is feeling like me they know they are not alone. I was never teased in school. I was very popular. Even in high school I...
    Itiswhatitis21 Itiswhatitis21
    41-45, F
    1 Response Jun 1, 2014

    Hell

    I am a seventeen year old girl with Duane's syndrome in my left eye; I am pretty sure it is type A. I never even really noticed and it didn't bother me for my entire childhood. Then I hit Junior High- whenever someone would decide they didn't like me it would be the #1 target of...
    differenteyesthanyou differenteyesthanyou
    18-21, F
    2 Responses Sep 26, 2013

    Hey, I only got diagnosed today

    after 4 years of trips to the optometrist. I'm 23 and only noticed it in the past few years & it's gotten worse in the past 6 months . Unless I tilt my head down I see everything in double. I have to sit across from people, if I sit next to them at a table I get asked 'what's...
    rosielee21 rosielee21
    22-25, F
    Aug 11, 2014

    I was diagnosed with Duane Syndrome in my right

    eye when I was just a baby, when my Dad noticed I couldn't move my eye. From a very early age I remember being in the hospital seeing specialists and having all sorts of eye tests, drops in my eyes, was given eye patch stickers to wear over my strong eye. I hated it. I'm lucky...
    baaraah baaraah
    18-21, F
    1 Response Dec 5, 2014

    I'm still in school and people will come up to

    me and demand "What's wrong with your eye? Do you have mental problems?" People talk behind my back. I have close friends who when I first told them about it squealed "EWWWWWWW". It's tiring, but at least I have good friends who make me feel better when that happens.
    hillywood hillywood
    13-15, M
    Dec 5, 2015

    Shy..

    ive had three surgery and it looks kinda better but still points down a bit. i went to see a specialist and he said he would make me an appointment for a surgery and then i called and they said he didnt>.< ugh doctors make me mad sometimes. is there anything that i can do...
    atreyuxo atreyuxo
    16-17
    4 Responses Dec 15, 2009

    Hi, my name is Sally.

    I am 45 years old and all through childhood was simply told I just had an eye condition. The doctors never knew how to diagnose it or what to call it so it is comforting after all these years to learn that what I have is not only rare but it also has a name! I have Duane...
    ssimpson69 ssimpson69
    46-50, F
    2 Responses Jan 24, 2015

    Kinda Cool Having Something So Rare.

    I take great pride in being unique. Everybody has their quirks. Not many can own up to this one. I have type A in my right eye. I have been fortunate not to need surgery as my eyes function perfectly while looking straight. There are no signs of being cross eyed unless I'm...
    Cougarmagnet Cougarmagnet
    22-25, M
    4 Responses Dec 20, 2011

    Im So Worry For My Baby Girl

    My 7 month daughter was diagnosed with duane syndrome a month ago. First the dr thought it was lazy eye. Its very hard for me because I don't want her to suffer. I know how cruel kids can be and I dont want my baby girl go thru that. I have some questions: does the eye patches...
    Worrymom1 Worrymom1
    31-35, F
    6 Responses Nov 16, 2013

    My Party Trick :)

    I was diagnosed with Duane's syndrome at about six months old and it never caused me any problems for years. Sure, some people sneered or didn't like it or commented but I just tried to shrug it off. Only being able to move one of my eyes inwards was my party trick. But recently...
    noname18 noname18
    18-21, F
    5 Responses Nov 17, 2012

    This is my story. It is long,

    but I hope you all can relate to it. A year ago I went on a catholic retreat called Kairos and I gave a speech on my ideals and how to find them and work towards them. I am going to share that speech here. It is motivational, and it is heart warming. I hope you enjoy it, and I...
    cmom96 cmom96
    18-21, F
    Apr 9

    Howdy Like Eyed People!

    I came across this site and figured I would put myself out there as a means to connect with others who share this extremely rare condition and additionally, extend support to those who may be struggling with the associated self conscious effect it may have. I was diagnosed when...
    NicoleFC NicoleFC
    26-30, F
    2 Responses Aug 20, 2013
    lovelymoon11 lovelymoon11
    18-21, F
    3 Responses Sep 1, 2015

    I To Have Duanes Syndrome In One Eye And Nystagmus In Other

    I to .have duanes syndrome  and nystagmus in other it would be interesting to know if any one who has duanes can wink with duanes eye I cant and I have been on other sights and askd other people can they,all came back with same answer they cant I wasnt diagnosed until I was in...
    jenny59 jenny59
    51-55
    9 Responses Sep 9, 2011

    Don't Worry About It.

    I have this syndrome I have had it since I was a baby. I am aware that it is rare condition and rarer still in males Ive neverreally been picked on about it as a youth how ever I Have always been aware when others have noiced it. I am a man now I still have the condition more...
    Obsalessance Obsalessance
    31-35, M
    2 Responses Sep 24, 2010

    i have type 1 duane syndrome ,

    when i was younger doctors didnt know what it was and thought i had a lazy eye so they made me wear a eye patch for a while, when i was finally diagnosed with it after a lot of going to the eye hospital and having weird drops that scared me. i never thought i was strange when i...
    autumnjade autumnjade
    18-21, F
    2 Responses Nov 14, 2015

    My 5 Year Old Son Has Duane Syndrome And I Am Looking For Advise

    hi. my 5 year old son has duane syndrome. as a result he has a tendency to turn his head to the side. i am worried that his neck muscles will be shortened as a result. is there anything that i should be doing to prevent this? maybe physiotherapy? also he tends to "neglect" the...
    sheri111 sheri111
    36-40
    5 Responses Jan 1, 2013

    My Party Trick: Continued

    Okay, I have now been to the hospital and have been given all the information on surgery and what will and could happen if I do or don't have it done. The stats are low, only 25% of people who have it done see any sort of improvement and some of the other 75% wish they had never...
    noname18 noname18
    18-21, F
    1 Response Apr 12, 2013

    Today, I was diagnosed with Duane Syndrome.

    After 17 long years of wandering what's wrong with me, and why my eyes are so different from other peoples', I finally have closure. I've been bullied because of my eye, and it made me depressed, but now I know that I'm not alone. I now know that other people have gone through...
    katiebug7 katiebug7
    16-17, F
    Feb 8

    "She's The Girl With The Funny Looking Eye, Right?"...

    ... Is what I commonly got asked all throughout my schooling experience. I was born with type 1 Duane Syndrome. Now that I'm 18, people accept it more and enjoy asking questions about it, and aren't as immature. When I was a kid in 6th or 7th grade, I hardly understood it myself...
    artislife55 artislife55
    18-21, F
    3 Responses Sep 18, 2013

    Last Day Of School! Living With Duane Syndrome

    I have out up with so many people making fun of me it is hard especially these last 2 weeks but today was my last day of seventh grade and it was all summer from there  At lunch today i sat in front of all of the people that make fun of me because my Friends were at the...
    honey828 honey828
    13-15, F
    3 Responses Jun 11, 2010

    Hello, Im a 15 year old boy

    and live in Finland, since i havent told anyone ever about my duane's syndrome type 1 i tought it would be a good idea to share my story here. I was born with it, between 1th and 5th grade i got teased about it from older guys in our school, it kept on going for a few years and...
    thundercoolmint thundercoolmint
    16-17, M
    1 Response Jan 11, 2015

    I Have Duane Syndrome, Anybody Have Hearing Impairments Too?

    Hi everyone! I also have duanes syndrome, as it is something I have always had it never really bothered me at first. In school people who sat behind me used to call my name so I would turn around and I would hear them go 'look she goes cross-eyed'. At the time it was really...
    Rachel223 Rachel223
    22-25, F
    6 Responses Sep 24, 2013

    Hi everyone! I'm 25 and am considering getting

    a surgery where they move one of my muscles in the affected eye back to help with the retraction when I look to the right and also to straighten my 15 degree head turn. I'm really nervous for the surgery and was wondering if anyone has had it done as an adult and achieved...
    sb8688 sb8688
    26-30, F
    3 Responses Jan 24, 2014

    You Have Down Syndrome???

    I was diagnosis with Duane syndrome when I was 8. It was pretty much went through hell trying to figure out what was wrong with my eye. All through elementary school I got made fun of because in 3rd my teacher decided to tell the class about my eye and made me sit up front the...
    okaybethyyy okaybethyyy
    22-25, F
    2 Responses Sep 25, 2013

    Duane Syndrome runs in my family (uncles

    and girl cousins). My parents noticed a problem with my eyes at 6 or 8 months old. They took me to a regular eye doctor, not a specialist, after I was 1 or 2. He recommended surgery, but didn't give them a name for my condition and subsequently didn't tell them much about it...
    TooTheMusic TooTheMusic
    36-40, F
    Dec 22, 2015

    I found out I had Duane Syndrome in

    both of my eyes when I was around 6 years old but it only started to seriously impact my life when I was 12. From what I remember my vision used to be great and I only had to tilt my head back to focus on distant objects, however that's not the case anymore. My vision over the...
    Ashleyc97 Ashleyc97
    18-21, M
    1 Response Dec 12, 2014

    Duane Syndrome Support Group! Please Consider Reading.

    I also have a minor condition of Duane syndrome in my left eye. I had one correction surgery in the past. It is difficult for me to talk to other people about it because they simply don't experience it. Furthermore, in high school i tried to avoid negative people and would...
    noname1022 noname1022
    18-21
    17 Responses Feb 27, 2012

    Hi I'm Chelsea. I was diagnosed with Duane

    Syndrome (Type 1) at a very early age as the first few weeks I was born were scary for my mom because she's told me about my left eye staying closed for that entire period of time. I had a normal early childhood but right about the time of entering 2nd grade my vision became an...
    lovelymoon11 lovelymoon11
    18-21, F
    3 Responses Apr 18, 2015

    Heres My Story

    Hi :). When i was real young i was dignosted with duane syndrome. My mother really didn't think anything was wrong with me until i turned about 3. But none of the docters knew what was wrong with me and they were concered, so they went and looked further into why i couldnt turn...
    hellokitty2244 hellokitty2244
    16-17
    3 Responses Oct 11, 2011

    Hi I'm india and I live in the UK.

    I have had duane syndrome ever since I can remember since I was born with it. I feel so alone sometimes as I've never met somebody else with the same condition as I know it's rare. Im 18 now and most people have accepted it, although I really got picked on when I was younger...
    innandrews innandrews
    18-21, F
    1 Response Oct 18, 2015

    Hi I have Duane Syndrome,

    type 1. It affects my right eye primarily. I have had surgery only once for a droop lid. I am struggling with cataract development now at age 42. I was not diagnosed until I was in my 20's. I am struggling with how to deal with it now as an adult in my working environment...
    curlyd13 curlyd13
    41-45
    Dec 4, 2013

    Has Anyones Duanes Syndrome Getting Worse?

    I'm 21 and I got diagnosed with DS when I was 8. Never really had any problems with it. I learned to turn my head with it. As of the past year I'm starting to notice that my left eye (that's the one with DS) vision is getting worse. I no long have any perifural (probably totally...
    okaybethyyy okaybethyyy
    22-25, F
    3 Responses Oct 21, 2013

    Hi, im Hollie im 14 and I've had Duane syndrome

    since I was born. Because of my Duane syndrome it means I can't move my left eye at all to the left. This really annoys me because it effects my site making everything double vision. Lots of people take fun of me because they think I have a lazy eye. Duanes also makes it hard...
    HMace HMace
    16-17, F
    2 Responses Jun 30, 2014

    Me, A Frustrated Teen

    Hey ya'll. My name is Taylor and I am a 15 year old girl. I have had Duane Syndrome since I was born but, was diagnosed when I was 4ish. I have type one which is most common. When I look to my right without turning my head, is when you can tell I have Duanes in my left eye. I...
    camotomboy camotomboy
    13-15, F
    6 Responses Jan 29, 2013

    it was something that was diagnosed shortly

    after i was born. it always got me teased in school. but that didn't bother me much. now, it is. it turns out that i cant follow my dream and do my dream job because of this syndrome. an surgery is not an option. i'm so disappointed with my life. it no longer has a purpose.
    nithya677 nithya677
    18-21, F
    Mar 26

    I got diagnosed when I was 3

    and I have it in both eyes. Just a few months before that I had a brain tumor. I can not begin to image what kind of stress this put my parents under. Growing up, it didn't really hit me that I couldn't move my eyes. None said harsh comments or treated me different; the only...
    macyl macyl
    18-21, F
    1 Response Nov 30, 2014

    My Baby Girl....

    My lil girl was diagnosed wit Duane Syndrome at around 7 months. She'll be 3 in July. I noticed around when she was 4 months, which is the time most infants begin to focus on objects, that she tilted her head back alot & wit that parent gut feeling knew somethin wasn rite, told...
    4Delaney 4Delaney
    22-25, F
    4 Responses Apr 11, 2011

    As sad as this sounds,

    I am actually glad that I am not the only one going through this condition. I been having DS for as long as I can remember, but I only found out what it was called just recently. As most people, I have DS on my left eye. It doesn't move outward, but my right eye is perfectly...
    irishp irishp
    22-25, F
    1 Response Mar 14, 2014

    Realized...:)

    I was diagnosed with ds at around 2 months old. my right eye is affected which every doctor ive been to and evry article ive ever read, says is rare because it usually happens in the left. I was always really shy because of it. I didnt want to have conversations with people...
    Csweet Csweet
    22-25, F
    4 Responses Mar 6, 2012

    I'M The Cross-Eyed Weirdo

    I have been diagnosed with type 1 duane syndrome. It's in my both eyes but you couldn't notice it in my left eye. I have known I've had it as long as I can remember. My mom had to visit several doctors to find out what was wrong with my eyes. Doctors kept saying there's nothing...
    bluegirlgreeneyes bluegirlgreeneyes
    16-17
    4 Responses Jan 30, 2013

    My Wife Swears She's Never Noticed

    so it's not that bad.  But I avoid having her on my left, as it's that eye that doesn't move that direction, so my eyes would cross unless I compensate & turn my head.
    mrmoo1231 mrmoo1231
    46-50, M
    Sep 18, 2010
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