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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. 90 People

    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 1 Response Aug 20, 2013

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    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 7 Responses Mar 13, 2012

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    My Son Has Duane'S Syndrome

    My 2 year old son has Duane's syndrome, I still have lots of questions about it. It's in his left eye, and his eye does not turn out, it just stops. I was wondering if there are any ways I can help make things more comfertable for him because I know his eye bugs him, because he...
    Remingtonsmommy Remingtonsmommy 26-30, F 5 Responses Apr 21, 2013

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    The Different Types...

    There are three types of Duane Syndrom. I have type one wich is when the eye does not move out towards the ear. Type two is when an eye does not move in towards the nose and type three is the worst. This is when your eye(s) are in a fixed positin when you cannot look either left...
    IsobelGrace IsobelGrace 13-15 1 Response Jan 24, 2013

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    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 1 Response Sep 25, 2013

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    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

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    Just A Quick Question

    I was just wondering If anyone who has had or considered the correction surgery if someone could give me the approximate cost before insurance because I have been contemplating this for a while now and I want to know to help me make my final decision
    CrypticResponse CrypticResponse 16-17, F 1 Response Apr 11, 2013

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    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 18-21, F 3 Responses Sep 24, 2013

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    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

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    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 4 Responses Jan 1, 2013

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    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

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    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 16-17, F 2 Responses Apr 12, 2013

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    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 4 Responses Jan 29, 2013

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    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

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    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 13-15, F 2 Responses Jun 30

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    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 2 Responses Oct 11, 2011

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    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 16-17, F 2 Responses Jun 13, 2013

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    Low Self-esteem

    Hi everyone, I'm 16 and have type 1 duane's in my right eye although it's kind of turned into type 3 since my surgery a year ago as I have limited abduction and adduction. I want further surgery as my eye is still off centre and my eyelid is droopy so I'll see how that goes...
    2 Responses Jan 14, 2013

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    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

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    Duane Syndrome

    Hi everyone, I've had Duane Syndrome since birth but wasn't diagnosed until a few years later. My parents thought that I just had a lazy eye. I have it in my right eye and it isn't as severe as some of the other posts I've read about it. I didn't have to have surgery on my eyelid...
    JayOdom JayOdom 18-21, M 2 Responses Nov 1, 2012

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    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 Mar 14

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    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

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    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

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    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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    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 5 Responses Nov 16, 2013

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    Looking For Answers

    I am 19, i was diagnosed with DS around 7, I lost most of the vision in my left eye around 10, the condition is in my right eye, which is rarer from all the sources i have read. I have noticed all my life that i have severely reduced peripheral vision in my right eye. I was...
    TimDeason TimDeason 18-21 3 Responses Jun 26, 2011

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    2 Children?

    hi i have an 8 yr old daughter with duane syndrome... i noticed something was wrong b4 she was a yr old... when she was little i would pretty much teach her that kids r mean n they would pick on her cuz of her eye so we made it a joke so she wouldnt b self conscious bout it...
    cdefiore cdefiore 31-35 5 Responses Jan 12, 2013

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    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

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    "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

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    This Is Me

    Hey. I'm 13 and my right eye doesn't turn right... I've always wondered, will I be able to drive If you know the answer please comment I've always been name called a bit but it doesn't bother me because I know I'm smarter and stronger than them.
    kaylahood356 kaylahood356 13-15, F 4 Responses Aug 6, 2013

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    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

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    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

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    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

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    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

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    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

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    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 36-40, F Jun 1

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    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 1 Response Jan 24

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    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

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    About My Angle

    My daughter is 18 months now. They think its DS as she has sixth cranial nerve absence when she was born she did not open her eyes much which i thought it was normal for few days but realize its not right when i took her to the docter was two weeks they said its infected so it...
    zayna123 zayna123 26-30 1 Response Nov 10, 2012

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    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

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    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 2 Responses Oct 21, 2013

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    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 16-17, F 4 Responses Nov 17, 2012

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    Related Experiences

    I don't think I have pica syndrome or if it's just a nutrition deficiency but when I get a bath or something I sometimes have a chew on the sponge or something because I like the...
    lucymichelle lucymichelle 13-15, F 1 Response Sep 1

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    I have pica and I have done for as long as I can remember. Unlike most people who have the syndrome/disorder I have had cravings for a WIDE variety of things throughout my...
    Pandasaurusrex Pandasaurusrex 18-21 Sep 2

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    When I was 26 year old I found out I got Klinefelter Syndrome I get a hormone testosterone needle every 12 weeks for the rest of my life.
    blackcat055 blackcat055 41-45, M 6 days ago

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    Having Aspergers Syndrome is quite challenging for me. I have always felt like a ghost or a being living in another world in high school. Because of my particular interests, I have...
    loveVictorandDumas loveVictorandDumas 16-17, F 1 Response Aug 21

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    I'm 18 and every time I look at myself in my bra & panty..I stare. I stare at my reflection and I'm happy with how I was born; bare left chest no pectorals/nipple/muscle just my...
    ardorzie ardorzie 18-21, F 1 Response Aug 22

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    In January I was finally diagnosed with POTS. For the past three years I have been being misdiagnosed with depression, migraines, and other stuff. It was really hard because my...
    babyhunnybunny babyhunnybunny 16-17, F 1 Response Aug 17

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    CAN I HAVE MORE RAT VENOM FOR MY MARTINI?
    JEM404 JEM404 41-45, M Aug 20

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    My name is Kate. I live in Oscar, Louisiana. I started experiencing symptoms in November of 2012 while pitching in a softball game. It all started with right shoulder pain. I was...
    Katedebetaz Katedebetaz 13-15, F 2 Responses Aug 24

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    Wow!!! For as long as I can remember I have had cravings for weird non-eatable objects. I remember exactly when it started, I was about three my Mom and Dad had this ugly, green...
    RedVinekiss RedVinekiss 31-35, F Sep 3

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    I am not sure if I am diagnosed or not. My dr said I have tietze but he never did any real test on me. But the problems I am having are the same as with tietze, so that's who he...
    zerudahima zerudahima 22-25, F 2 Responses Sep 4

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