Life With Duanes Syndrome, Positives, Negatives, and what i'm doing about it.

This is a good example of how my left eye 'retracts'...please ignore the bunny ears and the fancy colors. I got a little too bored.
This is a good example of how my left eye 'retracts'...please ignore the bunny ears and the fancy colors. I got a little too bored.
What Duanes Retract Syndrom looks like. Notice how my left eye does not look to the left like my right eye does.
What Duanes Retract Syndrom looks like. Notice how my left eye does not look to the left like my right eye does.

My Name is Catherine I am a teenager that has had Duanes Retraction Syndrome since i was diagnosed at 18 months old. Im currently a college student and a bowler. I worked as a waitress which many people notice my eye. My Duanes Retraction Syndrome affects my left eye. It can not move left in any way. When I look to the left I do see Double.

Duanes Syndrome is an eye condition. I don't want to give a long history of the syndrome because im hoping most everyone reading this already knows something about it. But if you don't it is an eye condition which some people believe the eyes are missing certain muscles it needs to move, while others believe that it is the actual nerves that connect the eye and the muscles that do not work or are missing. There are a few different types of Duanes Syndrome. The kind I have is called Duanes Retraction Syndrome. The number I have been able to find is that every year 54 people in the world are born with Duanes Retraction Syndrome.

Most optomologist say it is caused by elevation changes in the mothers womb while pregnant. Meaning that if the mother was traveling via plane a lot or spend extended periods of time is severely different elevations it causes this to happen. My mother lived in Maryland, a very low state. However she spent a while traveling with work taking her to the west coast. Where the elevation is higher. It is not her fault, mothers are not warned that this could happen, and it does not happen to everyone.

My left eye is the eye affected, as you can see from the pictures. But Duanes Retraction Syndrome means that when I move my right eye in a way my left can not follow it retracts into my eye socket, making it appear smaller or my eye lids look puffy. This is the biggest problem I have with my eye. It is totally the most noticably part, and effects every picture im in and how I look.

It has yet to affect my bowling, but I played softball for ten or eleven years. And I had to do things a little differently like standing wider and opened when I was batting.

Recently I graduated high school. My problem has 100% affected me in high school. Elementary School was hard but with everyone being so young it was very easy to get through looking back on it. However every year I had to bring a doctors note in saying that I indeed have a legit problem and that I needed to sit on the Left hand side of the room because I could not look Left. And In Elementary school I had a school nurse say that my eye problem was something other then what it really was and it was very hard for my parents and I dealing with her to straighten things out.

In Middle school, things were a little different. I still had to bring in a note for all of my classes so I could sit on the left side of the class room. However, the name calling did get worse. It was difficult to deal with the name calling. But high school was the worst. Because by that time I had been in school with the same people for quite a few years now, and everyone knows the problem but refuse to understand it so they choose to be ignorant and mean. However my friends and my mom have always been there for my eye problem.

From my problem I see a special eye doctor, Im the only patient he has that has my syndrome. :) So when I do see him my appointments are longer so we can talk about my syndrome. I always cry when he tells me there is no treatment.

I can totally say that having this had made me who I am today. Sometimes Its good and sometimes bad. Im proud to say that I am different from everyone else. But sometimes its the first thing people notice sometimes it isn't. But I have to tell them because it has to come out eventually. Sometimes people are nice and say they dont notice but thats not true. It has makes me feel embarrassed in front of some people though.

To everyone that I have read about that was able to have surgery to help them with their eyes. I am so happy for you and im jealous. There is no treatment for people like me and hopefully because people with DS have been able to be treated maybe sometime soon DRS will have a cure too.

I have always remained positive throughout dealing with this. And a lot of negative things have happened. I remember the stress of trying to get my liscense and having to hide it from the dmv. There is nothing I can do about this and there is no cure in the near future. But that has not slowed me down. I am constantly reading and researching about DS so I can inform people easier. Until there is a cure for DS and DRS I will be researching and informing people of the truth.

Im happy I am the way I am. Sometimes my mom tells me that when I was younger I would just stand in front of the mirror and try to move my eye, and sometimes I thought I saw it move. I would get so excited but she never had the heart to tell me that it couldnt.


Please email me at CatCombs92@yahoo.com if you have any questions, would like additional information or just talk. I check it frequently so i will get back to you!

and just remember...WE ARE ONE OF A KIND! <3

Update: November 12, 2015

The number of people both affected by Duanes and parents who has contacted me has been outstanding. When I created this piece it was to help people, although I thought I would never really touch anyone. So thank you everyone!

Just a few updates...

I am now in my senior year of college and NOONE has noticed. It is honestly so refreshing to be able to walk around campus with my head held high because noone knows my problem. Noone is looking around for me to "look funny". Don't get me wrong, I am sure many people have figured out I am different when I drink too much and "looking proper" is the furthest thing form my mind.

I have also beaten cancer. I had Stage 2B Melanoma.... and NO, IT WAS NOT LINKED TO HAVING DUANES. I get asked that a lot.

Unfortunately, I have yet to figure out the perfect head position to take photos with. Everything I try just seems so forced and unnatural. Which worries me... I would like to get married soon and not have to worry about looking ridiculous in my wedding photos.

I still do research regarding DRS and still nothing... I really do believe there are more serious issues out there like blindness that require more attention than DRS. It does not hinder me from doing anything in my life. I saw someone mention in the comments that someone recommended he try to get disability from DRS. I agree with his standpoint. It is completely unnecessary, in so many ways. And parents who have emailed me regarding disability, I do not recommend it. AT ALL. Not to mention, most doctors will feel the same way, it would be very difficult to find one who believes DRS or DS is a "disability". Who would want that? Who would willingly label their child "disabled" when they are not. Who wants to grow up their entire lives believe they are "disabled" when they are not!?

there are many facebook pages out there for "support"... but i found myself leaving most of them for their negativity and outlook on our condition. You would be surprised in how many parents believe DRS and DS is connected to autism...We are unique people, we are not "disabled", we are not "broken", we are normal people with a great talent. That is how I look at us, and I think everyone should.

One of the biggest controversies I have come across in regards to my article is how DRS or DS is formed within the body. After talking to multiple doctors of a variety of specialties, along with professors, it does seem like the most plausible cause of development. I know it is a tough thing to consider, especially for parents. But lets be real, pregnant ladies cannot live in a bubble, there are so many things in this world that could hurt a fetus. It is not plausible for someone to live in a bubble for nine months. And it is certainly not a mothers fault. My mom happened to go through an extreme change in altitude during the 2 days the eyes develop in the womb. Some mothers only drive around Florida. But Florida, like many states changes elevation a lot, just driving from one town to another. And every body has different sensitivity levels. Mothers, if your body is unique enough to create a child with Duanes... embrace it, do not ever be ashamed, or embarrassed. You created a unique individual who happens to have one small eye problem. There is so much worse things than living with Duanes, I promise you.


Remember everyone.. there are 54 of us born each year... we are one of a kind!

<3 Catt

Please continue to email me!

Catcombs92@yahoo.com

Comments 56 comments

Tina Hsu 5 years ago

Those of us who have taken the time to get to know you, love you for who you are. I think you are beautiful.


Herman 5 years ago

It is easy to focus on your weaknesses and lose "sight" of the big picture. I hope that you overcome your concern with this matter as time marches on. It would be in your best interest to channel your insecurity through a positive outlet like school or something. I have seen you plenty of times and never noticed it until you said something. I bet many people have told you the same thing. There is nothing at all wrong with your appearance (it is not like you are Medusa or something). Don't let this hold you back - you are bigger than that. Use this as an opportunity to become stronger. And if people poke fun, screw them - they are just people being people doing what people sometimes do. Don't take it personal.


jacob 5 years ago

i have this same problem too.

the worst most of all is the name calling. "cross eyed freak" really gets ya down.:(


Gemma  5 years ago

hi my name gemma i not sure what type duane syndrome i have im 15 years old and i get called cross eyed too i don't take it to heart anymore but it still does hurt feelings but i get used to it i don't get called it as much anymore but today i got called a lizard :/ and she said i have weird eyes .. i also have lazy eye and my eye quite small so doesn't help the most common name i get called is cross eyed... i wonder where that name comes from as everyone has same like name called at them


Matt  5 years ago

Hey Catherine,

Your story is identical to mine. I also have DRS it affects my left eye. I too played baseball and had to compensate. Also, always tried to sit on the left side in my classrooms. I feel for you and know what childhood was like for you. I hate the problem i have with my eye only because i affects my neck sooo bad. im just looking at the big picture and know that when im older i am going to have sooo many neck problems. I wish i could get rid of this curse but no im stuck with it. People don't notice my eye too often and i never tell anyone about it id rather be look at as a rude guy then a crosseyed guy. I rarely make eye contact if someone talks to me from the left side. I don't care if i look like an asshole i don't feel like explaining my eye to someone i don't know. i feel for you girl and wish you the best.


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Catherz 5 years ago from Maryland Author

Jacob and Gemma: as you get older it will get better I promise!!! High school is the worse because the people are so small minded. What we have is rare and because it isn't publicly seen a lot of people are scared of it. Remember this is YOUR LIFE AND YOUR EYE.. and screw all the people in this world that make fun of you! Chances are you will never see them again after graduation!

Matt: I haven't really had a lot of people say anything but i did show some people in my classes the other day about my eye and they were amazed. Are your neck problems serious? Can they help you? Thank you for what you said, and I hope things work out for you.


Kerry 5 years ago

I have had DRS since birth. Now 35 it does get easier. It has not affected anything in my life, I always refused to let it. I've never had any surgeries Yeah, in elementary I was teased and called cross eyed because others were simply uneducated about this syndrome. I don't tell people about it, they usually don't notice anymore. It is not hereditary as my son does not have it. Hang in there.


lana 5 years ago

catherine: i am 21 and live in england i have the exact same to you. yet reading what you have written i have learnt things i never knew. i was the only one my doctor saw with drs and attended hospital once a year until i turned 11 where i was told i was coping the best i could and to carry on. i had to remember to turn my head but when your tired you get lazy. some of my friend that i have met in recent years haven't noticed still to this day altho when i know people know me for me and i spend more time i normally tell them before they notice,and have been all very respectful. bulling at school was by far the worse i forget the film but when some kids at school saw it they started top call me crazy eyes along with cross eyed and who u looking at me on them. cried on many occasions. but growing up ive learnt not to take it to heart.

i now have to wear glasses as my right eye has got very weak for having to most the work over the years my left eye is only slightly out. i have been to 5 opticians and only the one i have stayed with has read up about it. the rest all asked me to show them and i found this quite disrespectful. i was told by the other four i couldn't have lenses. but i now wear one in my right eye, i was given one for the left but struggled to wear it but this is only slightly out so i didn't bother to carry on trying. i wear my glasses when not got my lens in im just hoping the right eye does get any weaker as so the left eye does all the work and gets just as weak. i don't notice unless im putting eyeliner on my eyelid of left eye i have given up as vision is so blurred it never goes right. other than that i live my life and let me own it and not to let any one get me down.

i recommend if u go to an optician make sure you carry notes and explain it to them x

today is the first time i have ever researched it as i have notes from what was given to my mum when i was 3. i have leant new things.


lanaxsx 5 years ago

kerry ihave been looking for answers t weather or not mu childre would get it when i do have them thanks


Juana Maria 5 years ago

I was born with Duane's Syndrome, my mother and grandmother had it too. I had 3 eye surgeries when I was young. It emproved my vision and my life. I still hate the way my eyes look sometmes, beacause if I don't wear my glasses they go cross. There are doctors who are trying to help those of us with this. I had no idea only 54 people in the world per year have this. I knew it was rare but not that rare.


lin 5 years ago

I have DRS and was asked by St Barts hospital in London to appear in a medical film about my eyes. As a young child I had to wear patches over my affected eye which didn't help at all. I was called names at school but ignored it. I couldn't play sports as I couldn't see the ball and I do get double vision. I still learnt to drive but instead of looking over my shoulder I used the mirrors. I passed first time. It shoudnt really stop you doing most things. I am not really sure of your explanation of how DRS happens. It was the first tine I had seen that as an explanation.


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Catherz 5 years ago from Maryland Author

To Juana, i love how you were able to have surgery that's fantastic.

Lin, I'm not sure how DRS happens, im not a doctor, however i have spent countless hours doing research and talking to my special eye doctor and even though they are not sure how it happens, its their best guess


Emily 5 years ago

I'm 16 years old and a junior in high school. I think I have the same type as you. It hasn't really effected my social life. I have a lot of friends, boyfriends, and still can play sports. However, I am extremely self-conscious of the syndrome. I get tingles down my spine whenever I hear the word "lazy eye" or "cross-eyed," or the awful phrase "follow my finger." I was called cross eyed in elementary school, and people thought I had a lazy eye. However, I don't think people notice it as much anymore. Ironically, it makes me feel better when people say that I used to have a lazy eye, because I feel like they don't notice it anymore. :). It's just annoying because every time I look in the mirror, that's all I see, a lazy eye. :(. But, the important thing is that we have to remember that we are very lucky that God gave us this problem, rather than something worse, like FOP. I am grateful because it has made me the person that I am today, very down to earth and modest. I often wonder if anyone would want to marry me, but love is blind. The right boy will come along and think that it's awesome and love me for who I am on the inside. The only problem is telling people about it, it's very hard to talk about it; only my family and a few of my friends know about it. DS unite! lolz


Darcy 5 years ago

I have lived with DS for 36 years now and although it gets easier after high school you still find yourself actively compensating for the lack of eye movement especially when around other people. I have very bad double vision when I look left but since I had surgery I now have double vision when I look right too. You learn to adapt and it is certainly not the end of the world, at least we have sight and the ability to see this world we live in. Hang on you younger guys as I promise it gets better, kids are just cruel.


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Catherz 5 years ago from Maryland Author

I still cringe at those phrases too. i don't think that will ever go away! lol. i HATE telling people, because i am still so unsure about what it is and how i got it, its hard to talk about it.

since highschool and my freshman year in college i now work at a VA hospital and everything is really good. The only thing is that the "not so mentally stable" Vets notice and will say something. and ask a lot of questions. but most of my patients love it! and make me go cross eyed a lot...it makes them feel better.

school was rough. but i could care less now. i just hope everyone who is still in school can look past it, and know although it is permanent, people only notice it for a little while.

Since my last post I have been back to the eye doctor and we discovered that my eye condition has slowly started to hurt my vision. but with the right eye drops and getting pressurized every few months it will be okay. :)


gabi 5 years ago

Hi, I have the same thing with my left eye. I was never picked on because of it, thank god. It does make me feel insecure though.

I had surgery when I was 11 to improve my left eye looking left a little better, but it didn't really help. My head was also starting to stand a little to the left of middle to compensate, but the surgery did somehow fix that.

My doctor said I could have another surgery, where they would take some muscle from my 'good' right eye and move it to my left eye. But i'll wait to get that, because I've seen pictures online that make me think that the older i get, the more my left eye will stand a little to the right when it's supposed to look forward. When i really start looking cross eyed, i might get the second surgery. But there is also a risk that something could go wrong with the surgery and then I'll have two crap eyes, haha.

I wish there was more info on DS, and not just medical blabla which i don't understand. And I wish i knew exactly how many people with DS there are in my country (Holland). Seeing people online who have DS too makes me feel not alone in this. So thanks for sharing


Brad 5 years ago

I have had this problem as well. Same eye. I'm 30 now and I'll be the first to say that when I was younger it was horrible. But, I promise to anyone else dealing with this. When you get older you will be accepted for who you are. Most people or atleast good hearted people understand that it is something out of your control and are far less judgemental. I will say that I feel that my left eye has gotten a little bit worse with age, but not much.


Jessica 5 years ago

Hey I have it too and know exactly how you feel. Its been very hard but we have to keep going.


kayla 5 years ago

i have dwayne syndrome i understand what your going threw its hard going to school


Catherz profile image

Catherz 5 years ago from Maryland Author

Gabi:

I have never heard of such a surgery, I am very happy for you. I have heard of the one that helps your head and stuff but it am not sure how it works. Eye surgery is a scary situation for anyone, the fact that you have to have your eyes opened meaning that you are watching the surgery is enough to scare me away of never getting surgery.

Brad:

I feel the same way about my age and my eye.

Jessica:

I will email you and will answer and questions you have privately.

Kayla:

if you have any questions please feel free to ask.


Gabi 5 years ago

Oh, I was completely under when they did the surgery, I would never want a surgery where I am awake either!


Meghan 4 years ago

My son was diagnosed with DS at 15 months. He had surgery to better align his eyes and eliminate the need to have a head turn to compensate at 16 months. That was a month ago. His eyes now look completely normal. The only time he looks cross eyed is if he doesn't bother to turn his head when looking to the left. But for the most part if he wants to see something to his left he just turns his head.


carrie 4 years ago

loved all the posts they have answered some questions for me,my little girl as got ds in her left eye its not really noticable till she looks left,she is only 3 months old and i have just cried reading your story... wow kids are terrible and i hope to god i can fill her with enough confidence and strengh to tell everybody to sod off if they even think of calling her!! xxxxx thanks for sharing your story xxxx


kelleyward 4 years ago

Thanks for sharing your story! Never heard of DS before. You seem like a really great girl! Keep sharing your story!


Joe 4 years ago

Hi I loved your post. I'm 29 now but had a really tough time when I was younger. I have the same as yours. Left eye won't go left. Keep doing what you're doing!


Alexander93 4 years ago

I have been living with Duan syndrome my whole life but you begin to get used to it after while,well until someone is like do you a lazy eye and U try to explain to them the difference but they still say U have a lazy eye but what ever they want to believe.

In the elem - mid school I was made fun of A lot.. But those who havnt started school and have duan syndrome just believe in your self and don't listen to any thing they say bullys are actually being bullied their self so just ignore them..

Iv been trying to learn how to drive but it is so hard trying to Drive because you don't know if your on ur side all the way or not and my eyes start hurting its terrible so I'm almost 19 and still don't have my license.oh well

I'm now a senior but when I started high school my head was turned 40 degrees to the left which gave me neck problems from keeping it there since born..But I joined the marching band and now my head is only turned 10 degrees.. I would suggest joining marching band in high school it's very fun and really helps straighten you head.. Even though I only use my right eye because that's my eye that turns both right and left I still see double sometimes.. I wish everyone the best especially when you start driving..


April Hickey 4 years ago

My daughter is 7 years old and has Duane's. I was wondering if it has affected your reading or handwriting etc? My daughter's doctor has said to sit her in the front of the class in the middle. Do you think this is the wrong thing to do?


carina3 4 years ago

I have three girls, I live in Norway, and my daughter who is 4 years old has Duans`s. I also think about how it will be when she starts to read and write, and where she should sit in the clasroom.... I found theese comments very helpful.


Catherz profile image

Catherz 4 years ago from Maryland Author

I would suggest sitting on the side of the room to which the eye does not move. For example my left eye does not move therefore I would sit on the left side of the room.

Reading and writing was only difficult because when your eyes cross and you see double . Sometimes I would read the same word twice but I was notorious for writing the same word twice.


charlene 4 years ago

Hi cathrine i am a 12 year old kid and i am doing a research prodject about duane syndrome and i would like to let you know that this article has helped me a lot! And i have not been able to find enough information anywhere else and i found a lot of info in ur article and i was wondering if i could use your info and your story and picture on my presintation? but i need you to respond by may 6th.


charlene 4 years ago

hi i sent the comment before this one my email is char7699@gmail.com


Gemma 4 years ago

Hi my 4 year old daughter has Duanes Syndrome. She has it in her right eye though, it doesn't move at all from left to right, it moves a bit up and a bit down. She hasn't had major problems as yet although I have over the passed year found her neck cracks a lot and she complains of neck pain...........just wondered if any of you have suffered from bad necks? or is this a separate thing?? It's a very rare eye condition and it's ashame not more research is being done to help with the movement side of things, i'm always looking to find something that may help but I hope she is confident enough to just ignore bullies in the future and not let it bother her too much :) thanks for your write up X


mikaela brown 4 years ago

i just found out my 8 month old baby has type 2 duanes symdrome and gemma i have read a lot about it and there are other syndromes that might go with ds that you might want to look up because its to do with the bone structure i think there are five different ones i don't remember witch one it was but i would ask the doctor and does anyone go to a neurologist???


Gemma 4 years ago

Hi Mikaela,

Thanks for your input. It's so hard to find other things out on the internet as most of the Dr's i've seen don't even have a clue on what Duanes Syndrome is. My daughter has not seen a neurologist although if you live in England and can get to Moorefields eye hospital and see a Pediatric specialist in Duanes Syndrome I found this helped my understanding of things much more, and they were brilliant! If you find out a Neurologist would be able to help please let me know!! Good luck with your son XXX


Catherz profile image

Catherz 4 years ago from Maryland Author

Of course you can use the information in your project. Sorry I responded so late. I have been out of town.


charlene 4 years ago

o it is ok my teacher changed the date to tuesday and thank you so much it is people like you who keep peoples hopes up! :)


Catherz profile image

Catherz 4 years ago from Maryland Author

I have not had any neck or back problems that pertain to my eye. I was born with Spina Bifida so that hurts my back but nothing that has to do with my eye. If anyone as more information about that or about doctors, research, and other things that haven't been mentioned please let us know! Whether it is a link or whatever we all need to support each other. That is why I started this page.


charlene 4 years ago

you are so nice and i wish that i new you so i could ask you more qestions! you seem so sweet!!!


Catherz profile image

Catherz 4 years ago from Maryland Author

You can email me any time if you have more questions. Catcombs92@yahoo.com


d.hem 4 years ago

Im in middle school i have ds and people just make fun of me that's why i don't try out for any sports


Brittany 3 years ago

I also have duane syndrome I have type 1 in one eye and type 2 in the other and I calculated the odds of this happening to me and came out to be a 0.0000324% of ending up with this severity but it did and my mom didn't even travel during her pregnancy. I have developed lazy loss of hearing in one ear and I am slowly losing vision in my right eye. Growing up I was called names like retard eyes. I am currently researching possible cures and hope to eventually find one and I was very touched by your story.


Isobel 3 years ago

Hello. My name is Isobel and I live in the UK. I have type one DRS. The worst part for me is the teasing. I have never been called names but a boy in my class who sits behind me in one of my lessons mimics me as I have to close my eye when turning round to talk to him. I don't take it to heart though and if you suffer from this condition, be proud to be a bit different! I know I am...


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Reynolds_Writing 3 years ago from Atlanta, Georgia

I have Duane too... Good hub


Britney 2 years ago

Hi, I have Duane's Syndrome as well. I'm so sorry to all of you out there who got teased about it when you were young. I was fortunate for that not to happen to me. From what I remember, I would just be straight forward about my condition, because I could tell they were curious. I actually turned it into what I called a trick. A lot of times, kids would just ask me to make my eye move weird. It always confuses people though because they don't know where I'm looking at. I think it's kind of neat that we can see two different things with our eyes. The only part that I absolutely hate about it, is the pictures. I just don't realize it's happening and then I later hate the photos. It's nice to meet others (even though it's only via the internet) with Duane's. I've never met anyone else who has it.


Brad 2 years ago

I am 25 years old and have always had duane syndrome. Although I only recently actually figured out what it was called. I have never met anyone like me before. I had no idea that there were other people out there. I played football and basketball and enjoyed all aspects of life thus far. I feel for the kids being teased, it sucks. I was called LES a lot, stands for lazy eye syndrome. That changed in middle school I became quite muscular compared to others, I grew up working outdoors, the first older kid who tried teasing me got a quick re-adjustment from my right hook. I would not suggest this way of handling it to anyone. I have always had very bad handwriting partly because of the duane syndrome, i struggle to focus while writing I get double vision. I do hold my head a slight angle and for the most part the general public does not notice. However spend enough time around me and someone will surely see it. I recently was approached by a boss who suggested trying to use it to claim that I am a disabled applicant (it would go a long ways into being able to land a job). I am not comfortable with the idea because I do not feel like trying to take advantage of a system in place to help people in worse conditions than myself. I suggest to those of you struggling to not keep you down, maybe never knowing what I had helped me, I never saw a doctor and never really knew anything was wrong. It was just apart of me, I embrassed it. Actions and deeds will speak a lot louder than any words, I suggest to not focus on the negatives but focus on who you are. Be a good person, be athletic, be smart those will get you a lot further in life than having an eye that does not move will ever hold you back. I hope you all the very best.


Isabella 2 years ago

I'm 11 and I have duane syndrom, I hate is but sometimes I don't mind. It's very hard to deal with, going to eye doctors all the time and name calling! Because I've had it since birth, my head is used to being at a certain angle, so in pictures my head is kinda sideways, but everyone says its nice because its like a signature pose! The name I usually get called (and this is be my sister)is twisted vision. I never look to my left in school or anywhere because I don't want more people to see my eye. I also have to sit on the left side of a classroom or table since I can't look left! But at least there's other people with this, now I don't feel like the only person with it!


Brad 2 years ago

Isabella,

I hope it gets better, for you and hopefully your sister will understand that she should be there to support you. As time goes on people will grow up, just be mature enough to deal with the name calling now. Do not let it get you down there is nothing wrong with you, nor was it something you could control. These things happen. I hope you all the best, remember all it means is you have to turn your head to see. Does not restrict your physical talents or mental capabilities. Be strong be proud.


Karen 2 years ago

Catherine and others,

My daughter is 15, and was diagnosed with Duane's Syndrome in 3rd grade, when her teacher noticed something different about her eyes (her teacher worked for an eye doctor for many years). My daughter's case is not as visible as others, only noticeable when she turns her head to the right (left eye affected). She is in driver's education, and drove with the teacher for the first time last week. He noticed that when changing lanes, she struggled with head movement, and he asked her to not use her mirrors. My daughter is quite outspoken, and usually speaks up for herself. She confided in me that this was frustrating, and that she didn't know how she would survive driver's ed with her eyes doing "this thing." I told her to stand up for herself, let her teacher know that she has Duane's Syndrome, let him know that she is different, and needs to use the mirrors to change lanes, and empower herself by embracing her difference. She has done that, and I couldn't be more proud. Thank you for all commenting and empowering others who have Duane's Syndrome by sharing your stories!


Ana 2 years ago

Dear people,

Thank you for all helpful comments. I am 32, I have Duane's syndrom so I understand how you feel. But I also want to encourage you a bit (especially the parents of children with this syndrome). I am married and mom :-) and I drive a car and, generally, Duane doesn't affect my everyday life. You somehow learn to live with it. I would like only to draw your attention to one thing - I am not sure if this is connected to the syndrome or not - I have a scoliosis, too. I would advise you to pay attention to the spine. Scoliosis cannot be cured and can cause a lot more trouble than Duane's.

I wish you all the best!


Christine 2 years ago

Any Ballet dancers out there?

My daughter is 13 and has Duanes. My question is she is having trouble with her turns in dance. Does anyone have any suggestions? She has trouble regaining quick focus after turn completion. Thanks. You all have amazing and inspiring stories.


Chelsea 24 months ago

I am 15 years old and was diagnosed with Duane's when I was only a few months old. I have type one in my left eye meaning that my left eye can't turn left and if I do look to the left, my eye can't move from the central position and I see double. Because of this, I have a very small heard turn and slight misalignment in my left eye. The misalignment makes my eye appear to be placed inwards more than natural. I also have a bit of a squint, where the eyelid on my left eye doesn't open as much as the eyelid on my right eye making one eye look smaller than the other.

I never really noticed the misalignment in my eyes until a few months ago when a boy approached me and asked if I had a lazy eye. It's a question I get asked a lot so I didn't mind him aking, as I thought he was just curious. Once I told him I have a muscle problem with my eyes he started to be very mean. It obviously made me upset and I started to criticise myself more and more when I looked in the mirror. Since then I have seen a specialist who said that the misalignment may be able to be fixed but it will not improve the DS because there is no cure (which I was already aware of).

If I am to give any advice to other people (advice that nobody else was able to give me), I would tell you that you are not a "weirdo" or a "cross eyed freak". You are a normal person with something that makes you unique from everyone else. Teenagers can be mean and very inconsiderate but this is simply because they do not understand what Duane's Syndrome is. I encourage you to ignore people who tell you that you have an eye "problem" because Duane's shouldn't be a burden or a problem in your life. Embrace it as your own unique thing that not many people have and don't let it wreck your self confidence.


Marwa 23 months ago

Your stories deeply touch me. My 9 month old daughter has just been diagnosed with DS in her right eye and it pains me to think about any teasing she will have in her future. Thank you all for sharing your stories. Although I know there is no cure, I am at this point doing anything possible to help lessen any symptoms including massage therapy, physio and regular follow ups with her ophthalmologist.


jenn 22 months ago

Thank you for your story. My son has bilateral Duane Syndrome. For other parents and students, please be aware that U.S. federal law provides for accommodations such as preferential seating under section 504 of the Rehabilitation Act. Parents set up a meeting through the school and a document is created describing the condition and the accommodations needed to ensure the child's equal access to education. Finding a local parent advocate can be helpful in navigating the legal procedures or prompting a reluctant school to take action. Of course, most schools do not advertise these services and many, many parents are not aware of their right to access them.


Lynn 21 months ago

hi everyone..i am 57 years old and just found out the name of my eye syndrome yesterday by an eye doctor who was very excited to see it for the first time..i can not turn my eye to the left and very little to the right..i have had very few problems with this (except for elementary school) because i learned very quickly to close my eyes and turn my head before looking directly at people ..i also find that i need more time to focus and am learning to be patient with myself..i also do not see in 3d and could not understand why until now..good luck to all of you:)


Georgia 19 months ago

Hi, i'm 17 and have duane's too. I can't look left with my left eye or right with my right eye, however, the hardest thing i had to overcome wasn't the eye issue (although that was an issue when it came to school, self esteem and bullies) it was that the duane's had affected the development of my hands. My left hand has a thumb the size of a one-year-old's (which doctors wanted to remove as it would be "useless" and i wouldn't be able to do anything with my left hand anyway) and i use my index finger as my thumb, also, the thumb on my right hand looks relatively normal but it doesn't have a knuckle at the top so i can't bend it. Although it can feel completely alienating to have these deformities, i'm really happy i have them because i wouldn't be as strong of a person or be proving doctors wrong by playing the piano, guitar, violin and more when i was told i wouldn't be able to. People adapt and altough it's tough you just have to remember that you have people who love and support you, that nothing is impossible, and that you are perfectly healthy and can live a long and happy life. Be grateful, there are people who are suffering from worse in the world. I have a friend who has no arm and there i was complaining about how i can't pick up a cup with my left hand "normally" when he can't pick one up at all because he doesn't have a hand to do so. Embrace just how special you all are and for anyone going through troubles at school or with bullies, regardless of if you have duane's or not, when you are focusing on your success and they're too busy wasting their time making fun of you, you'll be happy they did because when you get out of there and they see just how successful you've become they'll be wishing they were you so don't ever think you'll need to change yourself. I'm in college now and so is my school bully who is two years above me and has failed his exams and has now turned to me because he can't make friends! don't give in, embrace what you have and seek success in whatever you please:)


Roxanne 7 months ago

Thank you for this article.

You explained perfectly what it is like to live with this. I used to hate it and felt alone. Thank you so much. ❤️

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