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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. 80 People

    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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    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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    Hi

    Hi, I was born with this condition and developed a huge growth on the side of my eye around 10 years old. It was never removed because they said it was "cosmetic". I am really self conscience about it and was trying to figure out if it is common to have growth like this?
    hollygil hollygil 26-30, F 2 Responses Sep 13, 2012

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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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    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 1 Response Apr 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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    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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    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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    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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    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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    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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    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 3 Responses Mar 6, 2012

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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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    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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    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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    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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    Frustrated

    I was diagnosed with DS at age 10. Went through the majority of my years with the typical cruel comments but it never bothered me. Now age 50 i am so aware. How do i deal with this now? I cant look at people and concentrate without thinking about which eye and if I look crooked.
    ged970 ged970 46-50, M 2 Responses Jul 13, 2012

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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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    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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    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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    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 16-17, F 2 Responses Sep 26, 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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    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 Aug 20, 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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    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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    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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    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 22-25, F 1 Response Jan 24

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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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    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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    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 18-21, F 1 Response Oct 21, 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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    "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 4 Responses Sep 18, 2013

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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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    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 18-21, F 1 Response Sep 25, 2013

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    :)

    Hello, my name is Alex I was diagnosed with duan syndrome around 1 month. I was bullied ALOT in school because of my eye problem. Being called cross eyed it really brought my self esttem down alot. So I began to be really unsocial because where I turned my head to a angle people...
    Theprinz Theprinz 18-21, M 2 Responses Sep 13, 2012

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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 3 Responses Nov 16, 2013

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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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    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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    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 13 Responses Feb 27, 2012

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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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    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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    Related Experiences

    when i was eight, i was diagnosed with a condition named turner syndrome. there were so many life changes, like having to get a shot every night before bed and going to the doctor...
    rachelrubin01 rachelrubin01 13-15, F 16 hrs ago

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    Hello, I'm a mother of one handsome 9 month old boy. When my husband and I left the hospital June 29, 2013. We were never told that our son was born with Poland Syndrome. After his...
    Bernadzikowski Bernadzikowski 26-30, F 2 Responses Apr 2

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    I have just been put on 10 sodium tablets per day. This is apparently meant to help my POTS, has this worked for anyone else?
    justplainhollyjayne justplainhollyjayne 13-15, F 1 Response Mar 24

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    I have a really bad habit of eating flour. Its a really embarrassing habit so I try to keep it to myself but knowing there's other people with the same problem gives me comfort. I...
    KimmyO4Lifeex33 KimmyO4Lifeex33 16-17, F Mar 28

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      My 8 year old daughter has just been diagnosed with Melas after her first episode. She encountered loss of sensation down her right side, but this has now returned. We are...
    21sienna 21sienna 41-45, M Mar 31

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    When I was a child my parents knew something was different about me, and I was actually delayed in both speech and motor skills. (uncommon for aspies ;o it is more actually common...
    PerfectInsanity1988 PerfectInsanity1988 26-30, F 2 Responses a week ago

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    I need some feed back. Can anyone please explain their headaches with pots? I want someone to relate to so I can stop thinking I have a brain tumor
    cassidybute cassidybute 18-21, F 1 Response 4 days ago

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    I assume I have had pots for a while but was just recently diagnosed. I am concerned that I have something else going on as well. It's probably easier to say the symptoms I don't...
    crsmith221 crsmith221 31-35, M 2 Responses Apr 4

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    I have been diagnosed with POTS and misdiagnosed with various other things for 6 years now. I've learned that the most frustrating part about POTS is that it's an "invisible...
    LivingwithPOTS20 LivingwithPOTS20 18-21, F 2 Responses Apr 8

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    Don't give up the hope of it one day getting better.
    LivingwithPOTS20 LivingwithPOTS20 18-21, F 1 Response Apr 9

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    .................interesting
    mstud17 mstud17 22-25, F a week ago

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    I am 47XXY, I am 25 years old and live at home with my parents, in England. Im not very good at typing, as I find it rather hard to explain, but I just wish someone would...
    johndrinks88 johndrinks88 22-25, M 3 days ago

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    As a young teen I was just constantly thrown on pain killers for back and hip pain. It wasn't until Nov last year it was diagnosed as Fibromyalgia. My energy levels just...
    XanthiaJo XanthiaJo 22-25, F 1 Response 6 days ago

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    To be completely honest, I denied it for some time. I haven't actually done any kind of official test, but I have a nurse practitioner and a number of knowledgeable individuals who...
    Kavka Kavka 18-21, M 8 hrs ago

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