I Have Duane Syndrome - A Rare Eye Condition
81I Have Duane Syndrome - A Rare Eye Condition
My left eye does not move to the left and is slightly off center. This is due to a rare eye condition that I was born with called Duane Syndrome.
My entire life I have had to compensate for my eye condition. If I look straight ahead, I actually see double. I have very limited peripheral vision on my left side. I have difficulty seeing if my right eye is covered (ex. during an eye exam). And, interestingly - can’t use 3D glasses!
Most people have never heard of Duane Syndrome and confuse this with a lazy eye condition. I’d like to share more about what Duane is all about and how I’ve dealt with the condition, including surgery in my 30s.
What is Duane Syndrome?
There are six muscles that control the movement of each eye allowing it to move up and down, right and left and at angles. The muscles know when to move based on commands they receive from cranial nerves that exit the brain.
Duane Syndrome is a rare condition where the nerves and messaging from the brain simply don’t work correctly and therefore cause problems with eye movement. The problem is not with the eye muscle itself, but with the nerves that transmit the electrical impulses to the muscle. This is sometimes called “mis-wiring”.
In most cases, people with Duane Syndrome have problems with “abduction” or do not have the ability to move their eye outward toward their ear. This is the problem I have with my left eye,
There are also Duane Syndrome cases where people are unable to move their eye inward, also called “adduction”.
This is very different than the Lazy Eye syndrome, which is a condition where one eye is stronger than the other and clarity of vision is impacted. Lazy Eye problems can be treated and corrected.
There is no treatment to fully correct Duane Syndrome. Also, Duane Syndrome does not directly cause vision problems, but anyone with it is subject to normal vision deficiencies and may need contact lenses or glasses. (I do wear contact lenses, but not as a direct result from my Duane Syndrome.)
My Duane Syndrome Photos
How I Compensate For My Eye Condition
If I look straight ahead I see double images. To get a “normal view”, I have to turn my head slightly to the left and move my eyes slightly towards the right. When I am talking to people, they tend to follow where my head is pointing not my eyes, so they start sliding to my left and I have to start turning my body to the left. Sometimes we start moving in circles!
When I was a young girl, I wasn’t that good at compensating for my eye condition and remember getting called “cross eyed” from some of the mean kids. By high school, I was much better at compensating. Now in my 40s, very few people even notice my eye condition,
However, this constant “head turn” keeps my body out of alignment, so I have extra tension in my neck and upper back.
Also, since I don’t have good peripheral vision on my left side, I have to be extra careful when I drive. I double check traffic and look in multiple mirrors, whenever I am taking a left or switching lanes on the highway.
Video of Duane Syndrome Eyes
Surgery To Center My Eye
In addition to not moving outward, my left eye is slightly off center closer to my nose.
In my 30s, I saw a specialist at the world renowned MA Eye & Ear Institute who presented an eye surgery option. There was a surgical procedure available that would cut & stretch the eye muscles, which could lead to my left eye sliding back to a central position. If this worked, it could significantly reduce the amount of head turning I had to do- therefore helping to reduce my neck and back tension.There was a risk presented - that even if the eye was centered after surgery, it could move back to the original position. Even with this risk, since my insurance provided full coverage, I decided to move forward with the surgery.After weeks and weeks of extensive tests, the surgery was finally scheduled. I was put under anesthesia and the operation was completed in a few hours. When I woke up, I was surrounded by the doctor and her two assistants. They checked out the location of my left eye, made some minor adjustments with the thread from the stitches, then officially sewed up the surgery. Yes- kind of gross!For the first few months after the surgery, my left eye was centered. Unfortunately over the next year, the eye moved away from the center. It was not as bad as it was before the surgery, but it was no longer in the center. This was unfortunate, but even with the slight improvement I needed less of a “head turn” and the tension was reduced in my neck and shoulders.The Duane Syndrome Medical Guide
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Duane Syndrome Medical Guide
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Check Out The Eye Care Blog!
- Gene Therapy Offers Hope for Severe Hereditary Eye Disease
Title: Gene Therapy Offers Hope for Severe Hereditary Eye Disease Category: Health News Created: 10/24/2009 2:10:00 PM Last Editorial Review: 10/26/2009 - 2 weeks ago
My Eye - Today
Now in my 40’s, the general public does not often notice my eye condition, but most doctors still do. When you have those tests where you’re asked to “follow my finger with your eyes” or "follow the light", the left eye doesn’t move to the left.
I've actually had doctors who did not notice my eye condition- which is kinda scary.
Recently I went to a new optometrist to get my contact lens prescription updated and there was a student doctor helping out. When he saw my Duane Syndrome he actually got all excited, since he had never seen a patient with it before and asked if I would do a few extra vision tests. I was glad to help with his doctoral training!
I hope you found this Hub interesting and expanded your knowledge about the rare, Duane Syndrome condition.
Copyright 2009, M. Reynolds, All Rights Reserved
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Comments
Yet another interesting and informative hub. I learn something every time I read your stuff. Glad you're coping.
I know how you feel (sort of)... my sister also copes with this affliction. Her primary concern inthe past was how people noticed and reacted to it - some folks are downright rude. I did have to chuckle a little bit though when you said some doctors didn't even notice it - which truely is scary... perhaps those doctors needed their own eye tests! :)
Stay positive & nice writing!
AJ.. Thanks for the feedback.
Kim.. Thanks for the info about your sister. It's too bad people have to be rude! I hope this gets better (i.e. stops happening) as she gets older.
Interesting hub.
Do you have trouble driving, is it legal to drive?
Thanks for the feedback.. LOL-I hope it's legal! I can see to the left when I turn my head, I just can't rely on my eyes alone.
It's good to see someone with Duane syndrome posting their story! My son has DS, among many other things. Glad to know it hasn't slowed you down!
~Jess
Very informative Hub. Most of the articles on Duane seem to be from medical journals. This is the only information one the web that I found from a person living with Duane. Thanks for sharing.
Thank you for the information. I also have Duane Syndrome. My name is Faith, 7 years old and from the Philippines. I hope someday somebody can help us.
Wow, your WHOLE story sounds just like me (our age, the surgery, the head turn, being called cross eyed at school, same eye, tension in the neck/shoulders, head turning) - WOW I'm not the only one, I must go now - I will post more to you later. Regards, Jo
Jo.. Thanks for your comment and follow-up email. I am glad you found the hub helpful and I wish you luck in your decision around eye surgery.
Thanks for your post. I am 40 with Duane's also. I compensate with the head turn as well. I am actually having surgery tomorrow. I was amazed to find a doctor that said he could help. I had always been told the condition was not treatable. I am very grateful I was able to read your experience. I am not terminally unique. Thanks again.
hi there...i found your post after searching duane syndrome because my one year old son has been diagnosed with it. Questions I have are:
Should i get him the surgery now?
Will his ability to play sports be impaired?
How should i address it with him as he grows? I do not want to make a big deal about it or give him a complex. I want him to feel confident about it and not embarrassed so he can deal with anyone being mean to him.
Is there any exercises i can do with him to help?
I also have it, although i never knew what it was called. Had the cross eyed name calling thing too, which sorta sucked, but everyone's got something they get made fun of. I have decided against surgery cause i've gotten along fine this far. Sure i'd like it fixed but i don't want to make it worse either.
For those parents i know its gotta be tough but as far as socially its only an issue early on, by high school i was normal, popular, dated etc. (i guess from maybe learning how to compensate better?). And as far as sports i was on varsity baseball, basketball and soccer for 2 years each and started for a 3A high school. So if you're good it won't hurt you, the biggest thing was i had to learn how to switch hit in baseball at about 12 or whenever it was that curve balls were being pitched, i'd start your kid off batting lefthanded.
I was worried my kids might get it but so far my daughter doesn't have it and I have another on the way so we'll see. But it really isn't a handicap or anything, just an annoyance. Its harder when you're younger but eventually you adjust and since i dont know any other way to live, i'm doing fine. Its almost like having only one good eye but with the peripheral vision of 2.
Brian, Tia and Debbie.. Thanks for sharing your own experiences with Duane Syndrome. We are all part of a special club!! Best of luck to all of you. RW
Great write up, I too have this disease. I was trying to explain this to my brother and searched the net for more information. He was curious because he had a lady stop her at the airport to ask for directions. He said both her eyes were like mine but worse, and clearly struggled with it. But I'm sure she had a very severe and rare form of this rare disease, as I've met lots of people with it, including an Airforce Pilot, and all would say their daily lives are totally unaffected.
Here's my story for parents like Tia, and other interested.
I was diagnosed at about a year old, when visiting family noticed I sometimes looked skewed at a toy on my left. In my case, my eye is 'stuck' in the middle, and only moves left slightly, meaning if I try to look over my shoulder I have to turn my head a bit. I have 2 siblings, they are totally unaffected, and 2 nieces who are also unaffected, making me think it's a recessive-genetic trait.
I personally opted agaisnt surgury around middle-school when it was offered. It's possible that my head tilt adjusted naturally as a child since I needed glasses for sight, or that my case is so mild it was never a big issue. A good example would photos, myself and family would see the obvious head-tilt because of duane's, but friends and stranger's would have no idea. I've personally never had back problems or neck strain either, but I'm still in my mid twenties.
I think sports will not be affected at all by this. Once I got to the high-school level, my teammates loved it, especially in baseball as I could really mess with the pitcher, and any advatage was worth it.
I suppose I was just as awkawrd as any high-school boy when it came to 'social events,' but I still dated and did the prom thing. Sure it was noticed, but it was never an issue. I couldn't really say how it affected me during that time, but I will say while some seem traumautized by high-school, I still have good friends from then.
Talk to your doctor, but I've always thought of it as a gift. I view it as a constant reminder that in the spectrum of human conditions, Duane's in nothing compared to Huntingtings or others that affect your life and your mortality so drastically. One thing to remember, as with any surgery there is a risk. As a child I was active in team sports, still am active today in old-fart leauges, am an amateur astronmer and currently takign flying lessons. In case you are wondering, the FAA exam not only didn't care, it wasn't even asked. If I didn't mention it the doctor wouldn't have written anything down.
One thing duane's has tought me, your vision is precious, don't take it for granted. Unless it's absoluetly required, I'd never risk the surgery to correct eye position. For that same reason I'll not go under the laser corrective vision surgery, it just aint worth it IMHO.
If your worried about your child at school, all I can tell you is to love them. Do that, and no matter what they'll be happy in the end. Remeber that every child is teased for something. I might have been 'cross-eyed' to some, but those same kids were something else to others. This mild diesease tought me early that feelings matter, and to treat others how you'd like to be treated.
Its taken me years to compensate, only now when I feel comfortable I dont mind not correcting my head lol......My neck does stay stiff....I never realized i had a lean to my left side....i do notice when i watch tv I lay my head on my shoulder and when i get up I have major double vision..... so happy to read about your experience..makes me feel like I have someone who understands
I looked up this on google because i have this eye problem. Im 11 yrs old and i hate it. I've been teased all my life but recently got a model job so my confidence has boosted. Your story is inspiring.
I've got DS, it is not a problem for me. I am a mixed martial arts fighter (what you would see on UFC), and it does not prevent me from excelling at the sport.
Further, most people do not notice it. I just don't look left, and I have enough pull on my left eye to allow for a little glance to the left. So the head turn is not necessary.
Though, when I am tired it does look like a lazy eye.
I probably won't get surgery for it... It actually is slowly getting a bit better.
Good read though
Your story was inspiring. My daughter has it. But she is very good at studies and has a matured way of dealing with it even though some mean people make fun of her. she is twelve years old now, I hope this doesn't stand in her way of achieving success.
I have it too. And as story says it is hard only when you are a kid and get teased, however on a good side it was easy to sift out friends :-) So you may even consider it a gift for that matter!
I am over 30 now and of course learned to compensate by turning my head and positioning myself so that I as if have to look at you at some angle. It came naturally. I do think that most people would not even notice anything odd. My husband did not know about it for several years until I told him.
In my case I did not develop any neck or back tension (at least so far, probably being active in sports helps). No issues with driving, sports, 3D, etc. Basically I am lucky to be not affected in any other area of my life. Yes, if you watch me reading a book you would notice head turning, or on pictures I appear always looking at the camera from one side :-) There was a fear that neck will become deformed with years, luckily nothing like that happenned. On the opposite I think it made my neck very movable :-)
I did not have any issues with dating and frankly mostly only vision exams now remind me of DS. Those are always make me think what Guinea pigs feel like :-) I loved the story about doctor's. Here is mine: one doctor examining my double vision (I was 15) asked "So... how many dads do you have?" Again for me it was always a good way to identify idiots :-)
Girls and boys, think of it as being special, because you are! After you stop interacting with kids, teasing stops, and after that only on vision exams you will be reminded :-)
Thanks to everyone for sharing! I was glad to find the article and hear I am not the only one.
I have Duane's and i hate it so much i got bullied so much as a kid and beaten up just for looking different. Wen people call me bozz-eyed it hurts so much my temper just let's fly and i get into so much trouble i try to be posotive about it but it just feels like a curse. it's rare but not rare enough for me not to have it. it's hard to get a date or anything because the think i'm cute untill i start talking to them n the whole head thing it just sucks. I HATE THIS!!!!
Perhaps stem cell research will one day solve this.
I have Duane syndrome... my right eye cant look to the right. I'm 13. no one notices it really.. I'm really nervous about when I'm gonna start driving. i don't really care about my Duane syndrome because i can't miss what i never had. the only thing i really care about is appearance because it looks like I have a lazy eye and in pictures i look horrible because one eye is facing the camera and the other is in it's own little world.
It's was nice reading your story because I've never met anyone else who has Duane syndrome. :~)
I'm glad I found this because I've been considering surgery for sometime to fix my Duanes. Unlike you my eye tends to move inward when I look straight at someone. Ive had a lot of health problems here lately so it has gotten a lot worse. I think being a girl is what makes this syndrome so difficult. I am very self conscious about it, and always feel like people are judging me by it. I know that I am very fortunate to just have this one condition but it is very difficult to live with when going through school with so many cruel kids looking to find something flawed about you.
I am 15 years old and have been having DS sence birth.I have very low self-esteem and really bad at giving eye contact because of being self contious of what people would think or say if or when they notice it.(I said if or when because most people say they dont notice it until i turn my head a certain way or look up at someone.) I really want to do something about it but dont no what to do.I dont want to get surgery because most people result after getting surgery,there eye problem got worse.I have been in cheerleading and danceteams all my life.Now that i have gotten older and sel-contiouce of my eye im on the dance team at my highschool but cant dance like i want because of my self esteem and confidece(I tend to always hold my head down when i perform because of not wanting people to notice :-(. But thank u Mrs.Reynolds for your hub. That was very nice and brave of you to share your information with the world:-) Please if you have advice for me please let me know what i can do
Hey everyone. The only way that this syndrome affects me is when I go out to dinner and have to look up at the waiter. I get paranoid because I don't want my date to look over at me and my eyes are all crossed and stuff. What should I do. Please help.
Hello! I'm 23 and from the UK and have Duane's too, same story, people often noticed at school but do less and less now, partly because people are more polite and partly because I am good at hiding it. A few notice the head turn though. The only time I really notice is if someone sits to the left of me at dinner, I have to turn and face them to speak to them which can be awkward for the person on my right, and it seems a waste of time to try to explain.... For 7 years or so I have worn my hair so that it covers the outer edge of my left eye slightly, which helps me to not feel self conscious. It's great to see your pictures and everyones comments! x
I am 21 and my parents knew i had duanes from a very early age, either the doctors didnt tell my parents much or they chose not to remember it, but this hub has been so much help i had no idea that the reason i turn my head or close one of my eyes while reading was because of the syndrome. I have alot of other wierd things happening with my body and i was wondering if anyone knew wether or not it could be with my duanes. i know that doesnt really make sence but if anybody might have some answers for me PLEASE write me at whispree@yahoo.com, thanks a bunch all of you :)
I just found out my 10 month old infant has Duane's Syndrone yesterday. It breaks my heart because I know how mean kids are and know she will be made fun of. I cried when I read your story. Does every one with the syndrone have double vision?
27yo male same story as you to a T. Except i never had double vision or any surgery. Being called cross eyed in primary school was the worst of it! But as i got older i learned how deal with it. My wife had no idea i had an eye problem until i told her about 5 years into dating before marrying. I have got that good at covering it up. I try to sit to the left of people and turn my head when i look to the left. It only bothers me if i think about it. I dont have a sore neck and i can keep my head straight but do tend to turn it slightly.
i'm a 17 year old junior and i have almost the same condition. i got the corrective surgery a few years back and it correct my natural head turn by about a degree- almost no noticable difference- though i don't have to deal with double vision when looking straight ahead. the condition is tough in school, as being seated is difficult when talking to someone on my left. i often have to resort to not talking to people and appearing rude or uninterested, which i would actually take over getting the permament title of "cross eyed". covering it up is hard at times; aside from my parents only my best friend and an ex are aware of it. hopefully a complete corrective surgery will come about in the near future
I’m in my early thirties and also have Duane’s syndrome. My story is very similar to most of the stories I’ve read on this site. I’ve never meet anyone else with this syndrome.
It’s been very interesting reading everybody’s stories and I appreciate all of you who have shared your story. The following is some my story.
I have a beautiful wife of and two small sons, neither of which have the syndrome. I’ve worked in law enforcement for over eight years. I’m very aware that I have it, but have learned to compensate over the years. I do have a slight head turn, but never noticed it until I read the previous stories and only realized it then. My vision is 20/20 and I do not have double vision. I’ve had several physicals and none of the doctors have every notice it. Most people don’t notice it, but occasionally I will be reminded when someone does..
For those of you that are younger reading this don’t let this keep you down. I’ve had a good life, because I told myself at young age that I would not let this keep me from doing what I want in life. I even took flying lessons and told the doctor doing the FAA physical that I had it. The FAA doesn’t care unless you’re attempting to get a commercial license. Only thing that it has every keep me from doing was joining the military directly out of high school. Which with the current situation was probable a blessing. Remember that god puts things in our lives to make us what we are or to direct our paths in the direction that he wants us to lead. My life would be a lot different if I don’t have this syndrome. I don’t know if it would have been for the better.
For those of you that have children with this, just remember it’s not life threatening. They’re a lot worse things in the human condition that they could have, be thankful it’s not something a lot worse. If anything it will build a lot of character in your children at a much young age then most. They’ll know what it’s like to be made fun of and want make fun of others and they’ll learn to find like minded friends. Some have asked if it will affect their children playing sports. It did not affect me, I ever was a four time high school wrestling state qualifier and placed three of those years. So they’ll get out what they put into it just like everyone else.
I hope this has been helpful, if anyone would like to talk in more detail, or have questions concerning their children, or want to share experiences. My e-mail address is hays2000@gmail.com
I have my 2 years old daughter with DS. Her left eye doesn't turn out. when looking straight or to the right she looks normal. she doesn't turn her head when looking straight. One thing we have noticed is that the size of her left eye is not growing with her age and is now very small compare to her right eye. Is there anything that can be done to balance the size of 2 eyes. I was wondering if putting a patch on her right eye will force her to use the left eye...any suggestions will be hightly appreciated
My son has been coping with this sense birth. Hes now 9 years old. After quiet a few years of him being mistreated and misdiagnosed we finally found a doctor after moving to a completely new state(military) that worked with the doctor who discovered DS. I'm very grateful for your post i have not been able to find very much information about this we are now located in yet another state so we are in search for a doctor who has a knowledge of this. Its been so hard to watch him at times cope with this and not be able to help him. And yes hes suffering from mean kids at school and i have had quiet a few conferences with teachers some seem to not care at all others tend to watch him more closely as this new school year is just starting i'm hoping he can finally have a tiny break from the teasing so he can enjoy school for a change. Sorry for being so long winded. Again thank you so much for your post it helps knowing hes not alone.
My 9 month old daughter was diagnosed with Duanes Syndrome today. It's been great to read something from the perspective of someone with Duanes. Many thanks!
Hi, I am 24 and from the UK. I also have DS in my left eye and I'm unable to look left. I only discovered the name for it a few years ago whilst having a routine eye examination. I can look straight ahead and to the right perfectly fine.
Like others, I have learned to live with it so it is not much of an issue now. In fact, I rarely notice it as I compensate instinctively. Up until high school I think I was too young to take any notice and during high school I was never really bullied because of it. Kids did notice it - some used to call me cross-eyed, but most used to call it my 'funny eye' and thought of it more as a cool party trick than anything else. Since school, I have to say the only people who have noticed my eye have been the Optometrists. Boyfriends/new friends/work colleagues have all failed to notice it - and if they have noticed it, they've obviously been too polite to mention it! I generally try to avoid telling people if they haven't noticed, as I feel they would only keep looking out for it. I make sure I sit to the left of people to avoid having to turn my body left to talk and turning my back on someone who is on the right. I do not drive yet so imagine having a passenger sitting to my left may be a bit of a challenge!
I slightly turn my head from side to side whilst reading a book and have a tendancy to slightly tilt my head to the left whilst talking to people and watching TV etc. I only experience blurred vision if I try to look left with my eyes only rather than turning my head/body.
I have never met another person with DS so it is really interesting and useful to hear other people's experiences. Thank you
Does anyone know what the statistics are for the rareness of DS?
My 13 year old son has DS. He was diagnoised with DS at two.He wears glasses.He was told there is no cure and surgery wont help eighther.He does not have any problems with sports(besides broken glasses)He can control his eye.I think its interesting that it is always in the left eye.
My almost 11 year son has DS (left eye) but he is also very far-sighted (7.25). He was diagnosed when he was 9 months old with both. He has worn glasses to correct the far-sightedness since then. He only has a head turn when he takes his glasses off. He would like to try contacts but I wonder if the glasses have prevented the head turn since he has to look straight through them. I am worried that contacts will not have the same affect. Any ideas?
My story is so similar to yours that I felt like I wrote it. I'm 47 and very interested in exploring surgical options. The older I get the worse the neck & back issues become, to the point of debilitating pain. How can I find a specialist in Florida? I've spoken w/two optometrists in Orlando and both stated surgery wasn't an option.
Thank you so much for sharing your experience.
i have this two i have been tesed all my school life i found out i had it at about 5 and at 8 had sudgery it worked a little bit i have it in both eyes i can see fine but lots of pepole think i can see two of them now at 16 i am considring more surgey so those who r suffering from this i no how you feel
Jody ~ I am in Tampa, FL and have had surgery. I, too, feel like I could have written the original story. I stumbled across a doctor who is a strabismus specialist who informed me that I actually have Duane's. The surgery didn't correct all problems but, in my case, has improved my head turning for the present moment. I would definitely recommend that you make sure the surgery risks are worth it, since every surgery and case will be different. If you are still curious about surgery, my doctor is Dr. G.S. Guggino (Guggino Family Eye Center - phone number: 813-879-7711). Good luck!
I would like to reiterate the importance of what Hays said above...it is what you make it. This is, most importantly, not life-threatening. Life is too short to dwell on minor annoyances...you can choose how much you let it or don't let it affect your life. Thank you to all who have shared...it's nice to know that there are other people who are successfully dealing with the same thing I have!
Dan C says:
9 months ago
Great information and well written