Early 1980s, me in school uniform with an eye specialist avidly examining my left socket.
Worried parents pointing and prodding: “Our Richard’s eye won’t look left”.
I’m not sure why it took until the age of eleven for us to seek medical advice.
My left eye has never looked left. It’s something I was born with.
And I’ve managed to get to 47-years-young without really giving two hoots. It’s quite novel to visit a new optician. Cue gasps and whoops: “I’ve never seen anything like this before!”
I read a statistic this week that of the 131 million people born each year just 54 will be born with what I have.
It’s classed as a rare disease. Rare? 54 out of the entire human race? That’s not rare, that’s absolutely staggering. Extraordinarily staggering. It gets better: Of those 54 – most will be girls.
So in 1973 me and only about 20 other boys in the entire world were born with Duane Syndrome.
Hey! we should get together, go for a beer, raise a glass to how unique we are. I wonder if any of them are actually called Duane?
This week that 54-out-of-the-entire-human-race-revelation forced me to investigate further.
I guess it made me assess what this rare eye condition meant to me growing up. And, er, well, it didn’t really mean anything.
I was born with it and actually, it now feels reasonably hip and cool for my left eye to be an uber-rare-biology-breakdown.
Ten years ago I remember one young optician in Leeds. She was aghast. Poor girl. She’d never encountered Duane Syndrome before and after the initial shock was like a kid at Christmas. She urged me to wait behind for her “studies”.
Hey, anything for research. I should’ve asked for a discount on my new glasses.
Anyway, Duane what?
Duane Syndrome is a condition characterised by the inability of the eye to move outwards.
The syndrome was first described by ophthalmologists Jakob Stilling (1887) and Siegmund Türk (1896), and subsequently named after Alexander Duane, who discussed the disorder in more detail in 1905.
Duanes mostly affects the left eye – but can affect the right.
Basically there’s a miswire of my left eye muscles. Or a miswire of the brain’s message to my left eye.
So while my right eye is a bit of a showman which looks here, there and everywhere, the left has been stuck at basecamp ever since Peters and Lee topped the charts with Welcome Home.
I remember at school taking a bit of stick for having “gozzy” eyes. Or the old chestnut: “A lazy eye”.
I guess this wasn’t so great for my teenage self to have one’s appearance ribbed so publicly. But frankly Mr Shankly I wasn’t arsed.
The eye consultant in 1984 produced this high-tech gadget from his box of tricks and said eye exercises would help (this wondrous bit of kit was in fact a pencil…).
The doc insisted that every hour of every day I use the pencil to strengthen my eyes.
So I’d wave the HB around like some kind of orchestra conductor and bring it closer and closer and then further away.
Yes, this ultra eye boot camp was a total waste of time.
But seriously. Come to think of it. At times having to turn left whenever I want to look left has been a bit of a bummer.
In the last few years of school – while doing my GCSEs – I was in the worst possible seating position: Front row far right.
Cue teenage years and it was actually becoming my party piece. As pub tricks go it was pretty spectacular.
I’d go all Little Britain: “look into my eyes, look into my eyes, the eyes, the eyes, not around the eyes, don’t look around my eyes, look into my eyes…”
In pubs and things it was a bit of a pain whenever someone was sat to my left. Because I couldn’t really see them. So apologies to all those people over the years – but now you’ll understand.
Walking along the street with someone has always been a situation where I have tried to always stand on their left.
And at times I’ve done what now seems like an odd dance move to make sure I was in the best position to see them and have a conversation.
Social situations or work meetings can be an issue. Where I sit depends on how comfortable I am. Far left of a meeting room is great as I can see everyone. Far right is not good unless I shift my body at an angle.
And in meetings and things I just get there early to get my pick of seats. Driving is ok. I just have to really turn my whole body left. Not just glance left.
I’d be quite stuck if I lived in Europe and had to drive on the right hand side.
I guess for the best part of half a century I’ve got good at hiding my eye condition. Always turning left and never allowing myself to try to look left.
Occasionally I forget and just glance left. And for a split second I see double.
Pretty handy if I’m looking at something good – like cake.
Oh, and I should probably say that Duanes aside, my eyesight is pretty good.
So – there you have it. The reason I sometimes look odd in photos and do a silly dance to stand on your right.
Always wanted to be a bit different to the crowd.
Anyone else out there with Duane Syndrome?
Let’s sit on the right (or left) together.
Fellow Duane Syndrome pal here! Nice to know I’m special but that there are others out there who are living with it and not mad at it too 😋
Hey – hi Holly! great to hear from a fellow Duane Syndrome pal! thanks for reading and commenting. My DS has been pissing me off a bit recently, but hey ho- what can we do?! cheers! Dickie
I have BILATTERAL DUANES FULL PARALYSIS/NON EXISTANT 6TH CRANIAL NERVE IN BOTH… I HAVE NEITHER LATERAL MUSCLE! …SOOO HOW RARE DOES THAT MAKE ME?! LOL
Very interesting read, thanks for sharing Dickie! Our 3 year old daughter has recently been diagnosed with Duane’s. I was researching the topic when I stumbled across your page. Great to hear such a positive perspective on the condition and know that she can lead a normal life and not be held back. And wow – I didn’t realise it was quite so rare!
Good luck to your daughter Andrew. She’ll be fine. Just make sure in school she has pick of her desk etc.
So if she has Duane’s in the left eye she should be asking to sit far left of the room. Just so she can experience the class as fully as possible and see things properly. I wish I had done that when I was at school but was stuck far right – the worst place for someone with left eye Duanes. I’m quite particular about where I sit in work nowadays though! good luck with everything. Honestly, it won’t hold her back at all.
I am 59 years have lived with Duanes my whole live. Never drove a car. The school I went to would not let me take drivers ed. The older I got made me intimidated so best I didnt. I had surgery when I was in eight grade. One of the first in Washington State. Didnt do anything for me. As I am getting older I am having lots of trouble with walking. Equilibrium and was just told they have no glasses for me to help me see. my brain has blocked all sight in my effected eye when i had surgery. The way they did my surgery is the took the 3 good muscles in my eye and tried to make a muscle to fix the one I am lacking. I know what is like to sit and be on the side of people so they dont notice. It sucks when they do being its an eye and I notice when they do. I have been trying to find anything thing about what factors getting old has on Duanes . Any answers ?
Thanks for leaving a comment Lorri and sorry for my slow response. Sorry to hear that your Duanes has caused so many problems for you. Quite brave of you to have surgery and be one of the first to do that. I’m 48 now and I guess – other than the DS – my eyesight is reasonably good. I don’t like driving much – especially at night. I feel my eyesight is not so good later in the day when I’m tired. Maybe that’s normal anyway? Take care and thanks for getting in touch, Dickie
I have duane retraction syndrome type 1,
Well get to know,
Hi I’m 68 years old and I have your problem except I didn’t have it when born . I
I had a stroke at 25 years old and woke up with double vision. I’ve had to learn how to do everything, walk down steps, catch a ball (still can’t do that well) and drive a car good job I live in Aust , anyway I’m doing ok and I’m ageing well
anyway you just have to stay positive.
Thanks for your story and take care
Hey, just stumbled across this! I’m a 50 year old primary school headteacher in the UK with left sided DS. Your article made me laugh! You described the struggles of DS perfectly.
I struggled with self consciousness at school and a bit of unpleasant name calling but I came out the other side! I’m still quite conscious now but it hasn’t held me back! In all honesty, I’ve only just begun to “embrace” my DS and be more open about it. I used to change the subject if anyone directly asked me or laughed when my eye didn’t conform (rude!) but now I tell them what it is. My husband rolls his eyes (if only I could!) at my “syndrome” as it is one of my many “hypochondriac” issues though probably my only genuine one!
Nice to hear we’re rare…………..I always said I was unique!
That’s brilliant to hear you are embracing the DS Melanie! I was at a restaurant on Saturday and my friend was about to sit down but I ‘stole’ his chair saying ‘Sorry mate, I’m sitting here otherwise I’ll get double vision and see you twice…” Anyway, prompted a conversation about DS and I got the best seat in the restaurant!!!
Thanks for creating this, my 1 year old daughter was recently diagnosed with Duane’s syndrome and my wife and I have been quite devastated by the potential for her to not live life to the fullest. Your perspective on this has been quite welcoming and is useful motivation for our family. Were you able to play sports or do other children’s activities that required some level of hand-eye coordination?
Hello, friends of Duane — I’m just now reading your insights & my head nods with every one.
I am a DS”type 1″ in the left eye, and am left handed. But I’m not sinister!
My Duane’s is exactly the same as it was when I was diagnosed at age 6. At that time, the thinking was that DS was caused by muscular deformations. Now, it’s “enervation.” Regardless, I remember my parents standing in front of me, asking me to cover my right eye while I tried to follow their hands moving left and right. You can imagine that didn’t work very well, and I can remember that it didn’t work at all! They didn’t do that for long–they realized it was counterproductive.
I just turned 70, & In the past 2 weeks, I’ve had cataract surgery in both eyes and am so happy to see beautiful shades of colors again. Late this afternoon, Duane’s did not diminish the deep blues and purples of the storms moving northeast. The return to light and color is astounding and energizing.
To the parents whose children are recently diagnosed with Duane’s — teach them with confidence that this condition does not diminish their ability to learn and to get along in life. Teach them–and maybe you could try this yourself, — to turn your head a bit further, or shift your shoulders a bit to the left, or turn your writing paper or book you’re reading (or the paper on which you’re writing) to a different angle in order to take it in as completely as possible. When your children learn to drive, make turning left a natural extension of these habits — talk about what you’re looking for on the road and mention how carefully you’re assessing what you see. Ride bikes with them and let them make lots of turns. Let them blow bubbles that float off left and right. Give them opportunities to track their steps clockwise and counterclockwise — running around a tree, jumping rope, etc. Play hide and seek moving left and right. Play hopscotch starting on the dominant foot and then try starting on the other foot. Let them draw on a chalkboard in big flowing letters so their eyes can “track” their large motor movements.
I taught for nearly 40 years and am a musician — a pianist & organist, a singer, — and a harpist, which requires that my music stand be placed to the left. It never occurred to me, until I had to play my harp in very dim light (not easy with cataracts), that Duane’s could be a hindrance to a harpist!
Parents, make DS a normal part of your children’s existence, deal with its truth, and move on. Don’t dwell on frustration or difficulty — look for a way to modify a stance, adjust an attitude, or to acknowledge accomplishments and progress. “Accommodate”, not “negate.” Take your children to the eye doctor to validate that there’s a professional ally on their side along with you, their family. When your children are learning to read, let them “track” with their finger the words they read. Then let them read the same passage without using the finger to point, so they can acclimate their eyes to scanning line by line, phrase by phrase, word by word. It gets easier each time. Consistency & frequency matter. Let them choose where they’d like to sit at the table or in the audience at a movie. (Their necks can get tired if watching a movie is an effort.) Show them how to read a map and talk about turning right & turning left. Let them make a map of their neighborhoods.
But beware: It is surprising to me that people in ophthalmologists’ offices are not acquainted with Duane’s. Today, at my post-op visit, the surgeon who performed my cataract surgery introduced Duane’s to an assistant, who had never heard of the condition. Please know that the surgeon asked me first if he could use my help in this way, and, of course, I said yes. It’s a rare condition, after all. Sometimes you will need to speak up about it.
You could request your child’s school / teachers to let your child sit on a particular side of the room, if necessary — but let the child make the daily accommodations. The more naturally and automatically the child can adjust, the more powerful the adaptation and the less of a hindrance it becomes. Inconvenient, sometimes? YES. A hindrance? Only if you let it be one. Believe me, the world will not stop turning to accommodate someone with Duane’s, because someone with Duane’s can accommodate the world.
This info from me is a distillation of my experiences from decades of living with Duane’s. In the long run, Duane is a companion I’ve known for quite a while, and we are friends. Personally, I don’t know anyone else with such a friend, but I’ve been encouraged by reading your accounts! We all can resonate with each other’s experiences and view points. Thank you for considering mine. Sincerely, Betsy Brandt
Hi. Just today we found out that our 8 month old girl baby had Duane in her right eye. Devastated but feeling better after reading this post and your comment. Thank you.
Regards,
Kaviya.
Parents, one other idea: you would do your Duane’s child a favor if you could teach them “touch keyboarding” skills — confidently typing without looking at their hands. The “hunt and peck” method is so prevalent today — but, in my opinion and experience, it would be so much easier, quicker, & beneficial for your Duane’s children to touch- type and see results by looking at the screen instead of looking at their hands constantly moving (and wandering) up and down, right & left, for the correct key. Touch keyboarding can be taught systematically, step by step, with lots of consistent practice and positive reinforcement. The end result is that this is a time saver and a frustration-reducer. This is my opinion, but I have experience, too, as I’ve taught typing to elementary and middle-school aged kids. It’s a life skill.
Fellow Duane girl here! Mine’s the left and never have I been so popular in the eye doctor’s office. There is much excitement when my appt is the same as when an intern is there. Complete opposite of the younger years when fellow students would ask me to look to my left and snicker. But I’ve learned to live with this and so what if I have to fully turn my head to change lanes. It’s been my thing and I make it look cool. 🙂
This is brilliant Ann! love the ‘changing lanes’ thing! HA – I do that. Are you in the US? We don’t really have ‘eye doctors’ as such – just opticians which sell glasses. I mean they obviously look at our eyes but its about vision rather than scope of vision. I’ve often wondered is that why the UK seems miles behind the USA in terms of support for people with eye disorders. I mean, we do have eye specialists and eye hospitals but you would need to be referred to see them by a doctor. There’s not a medical person you could easily go and see about your eyes. Incidentally – the UK has just asked people with Duane Syndrome to declare their ‘condition’ to the DVLA which is the government motoring body. I have done this this week. Sees mad that I have been driving 31 years incident free and only now am I being told to declare my condition to the authorities. Starting to think I should have declared this condition everywhere I go! – concerts – so I get best pick of seats etc! ha. Thanks for reading my blog fellow duaner!
I am also suffering from duane syndrome type 1
Hi! I have Duane’s Syndrome type 2. ( My left eye doesn’t want to turn in.) With that I also try to sit on someone’s right so I can see them. You explained what I’ve experienced with Duane’s perfectly. I’m from a very rural small town. I only discovered that my condition is actually Duane’s in December of 2020 when I saw an ophthalmologist for the first time. (I was 32 at the time.) We didn’t have access to an eye specialist in my area unless you drove a good distance to a major city. I’ve had 4 surgeries since then. I will most likely need a 5th, because the 4th made me have double vision constantly. Thanks for sharing your experience! It’s nice to hear from others who have went through the same thing as you.
My 8 year old boy has Duanes, I’ve often wondered how it’ll affect him in later life with driving etc. Thank you so much for sharing. I actually think he’ll really enjoy reading this too as you’re account is funny, brilliant and most of all a positive story!
Hiya! Thanks for your comment. Your boy will be fine! Just make sure in school he gets to pick his desk so he can see the teacher properly etc. good luck! Dickie
Fellow duane syndrome kid here thank you for all you have said all these great things about it I am 12 currently and doing a report thank you so much it almost brings a tear to my eye.
Hi Myles! Thanks for getting in touch. Glad you liked my article about DS. It feels cool to have such a rare condition. I’m trying to embrace it a lot more these days! Good luck with your report. Best wishes, dickie
Hi Dickie, I have a 2 year old son with Duane’s. We managed to spot it in the first couple of weeks after birth. It was quite traumatic to start with as we were told all sorts of different things that could cause it or that it could get worse. Now he’s 2 and can sometimes be a bit lazy he copes really well and it gave us some peace to know that he’ll never know the difference. It’s got less noticeable as he’s got older and I’m pretty sure he’ll embrace it just like you have. 👍 our second was born with CDH which is also was a random birth defect and he came through his op with flying colours. Needles to say we are stopping at two. A very good read to hear someone who has grown up with Duane’s and it’s not effected them. Thank you
Hi all,
I am a parent of a 14year old boy in Australia who has Duane’s RS too. His teachers have flagged his struggle with comprehension when reading. He is an average reader but never loved reading (life is all about sports for him!). He can fully comprehend something when it is read to him. I am trying to find out if Duane’s affects his ability to comprehend. If there is issues tracking when reading, or getting the message to the brain or his eyes working together with binocular vision. Is this an issue any of you have experienced? I was told early on that copying off the board would be tricky for him but little about his reading.
Cheers,
Lisa
Hello Lisa, I wasn’t a prolific reader when I was at school. But I went on to become a journalist and write books so DS couldn’t have affected me too much in that area. I don’t think DS affected my ability to comprehend info. That said, I was rubbish at school – down to a few things – very strict teachers and I just couldn’t be bothered with it! Sorry, not sure this helps! good luck to your boy. He’ll fine. Dickie
I only recently started looking into my eye condition. I’m 29, F & it’s my right eye that don’t move outwards.
I’ve seen a lot of comments from parents who are concerned I had a real solid group of friends through out primary & you’ll always have the odd comment just make sure your children’s self esteem isn’t bruised from it. I never got bullied or anything! (Luckily).
I’m not sure growing up I even realised I was any different to any other person. I played sports & academically I’ve always got on well.
Maybe I’m a lucky one, I don’t have a noticeable squint and I’ve never had to have any op’s. I’ve just lived life like anyone else.
It’s been nice that this read has been so positive from your view point too dickie! One of the first things I’ve read while looking into my condition more! Thank you x
Hi Emily! Glad you enjoyed reading my piece. And it was one of the first DS things that came up! Glad you had good friends growing up and good support. I think I did OK with that too. Cheers, dickie
I’m 43 year’s old and I was born with DRS. It is in my left eye. So glad I found you, I so needed to read what you wrote about DS. I learned to live with it but never understood why it happened to me. Selfish it sounded, I know. I thought I was the only one who had it while I was growing up. Been to many diffrent doctor’s and none of them will even consider surgery. I guess it’s a good thing. My issue is that I don’t like my picture be taken. I hate what my eye looks like. I have my sight and for that I’m greatful. How can one overcome the fear of camera’s? It’s my biggest insecurity.
Thanks, Dickie
HI Jeannie – glad my experience helps. I don’t really like pictures of me either. But I’m happy to have selfies with people as long as I take the photo! I think I have mastered how to take good ones now! I think maybe you’ll always have a bit of fear of cameras. I know I do a bit. Glad you have joined the DS Club with us!
Hello all,
I am a 68 year old woman with type 1 Duane’s syndrome. The funny thing is , I just learned there are 3 types yesterday while my ophthalmologist was explaining my condition to a new employee (after considerately asking my permission).
I didn’t know there was a name for my eye problem until I was in my fifties and another eye doc asked me if I knew I had DS. Surprise! My mother had told me it was my delivery doctors fault when I was born because (she claimed) he “burned my eyes with some kind of eye drops “
Oh mom…. I believed you for so long.
I’m sure a lot of my fellow DS peeps also went through some bullying , especially in my junior high years, where I was called Clarence the cross-eyes Lion by some nasty boys. Or kept hearing “where are you looking – here or over there”? After a while , you learned to look down most of the time.
Flash forward to adulthood and all is well, happy life, long loving marriage , 3 great kids and 1 beautiful granddaughter.
Recently had cataracts removed & was getting follow-up yesterday.
I’m just happy to finally see this (after googling Duane’s syndrome type 1) and finding out I been alone all these years.
Thanks for sharing your stories,
Vicki
Hi Dickie,
Thank you so much for writing this and also thank you to everyone who commented and shared their experiences of living with Duane. My 1 year old daughter also has DS. I’ve been searching and consuming all bits of information I’ve come across and this is, by far, the most encouraging.
Muy daughter is the most energetic, curious, driven and bright little person I’ve ever met. I have no doubt she’ll thrive and will have very good chances at anything she tries. I’m just worried about the teens phase, especially in this hideous era of unrealistic perfect body image pushed down the throat of kids in social media. I guess I’ll just have to work harder at helping her build her self esteem so she can deal with malicious comments (the thought of anyone bullying her makes me wild, so I’ll also have to work hard at not over protecting her!).
I’ve been wondering how to go about telling her. Do I wait for her to ask? I suspect it won’t happen for a good few years if so. Or do I just introduce it to her as soon as she develops a bit of comprehension so she incorporates this knowledge of herself very early on in her decisions, etc. ? I’m inclined to do the latter, but any advice on this would be much appreciated. I just want her to know from as early as possible, how wonderful and special she is (Not despite DS, but because of everything she is, including her DS).
Thank you again,
Laura
Hi Laura! Thanks for reading my blog and leaving a message. Yes, I agree, introduce it to her as soon as soon as she’s able to understand it a bit. I’d also tell teachers at her infants / school at appropriate times to make sure she gets best seat in class. She’ll be fine! Dickie
Very happy to have stumbled on this page and especially reading all these comments – it’s nice to share in the same experience and feels a little less isolating! I have DS in my right eye and as kid was very self-conscious about it but as I grew up became quite grateful that really it doesn’t impact my life all that much. The little adjustments and changes we make in our day-to-day life have been articulated so well by all this comments and your blog post. No one else in my life quite understands why im so particular when choosing a seat for dinner! Glad to feel a bit of a sense of community for all those with DS
Loved your article and recognised so much in your experiences, including my own “little dance” as I try to manoeuvre to someones left (while they seem to want to do the same!), ends up being some sort of weird dance battle!
Thanks for making me laugh!
Julia
I just came across this, and it really made me feel seen. I’m 23, female, and I’ve been aware of my condition for as long as I can remember but it’s only recently that I was able to put a name to it. I spent most of my childhood being shuffled from one ophthalmologist to another, as they all tried to “train” my eye. I even had to wear an eye patch for a few years, like a little pirate — and you can imagine what that does to the confidence of an already shy and awkward little girl.
Over time, I’ve learned to accept it and live with it. But now I’m realizing that my body has been compensating in ways that caused other issues. Years of turning my whole head or body to look to the left have left me with a slight permanent tilt to the right and chronic neck pain.
Still, I’m grateful to finally feel a sense of community with others who have DS. It’s comforting to know I’m not alone.
Hello Wiam. Thanks for reading! Sorry you have had to deal with other health issues as a result of the DS. Yes, you are not alone. Welcome to the DS community!
It has been very interesting stumbling across this page, and fun reading the experiences of others that are so much like my own. I, a 20 Y/O F, have type 1 DRS in my left eye. I was very lucky in that I was recognized to have it at around 1 month old and referred to an eye doctor that was familiar with the condition. So far, I have lived a pretty normal life, I am able to drive, I danced for many years, I am in college, and having DRS even led me to raise Guide Dogs for the Blind. I only have a mild head turn, and people don’t tend to notice it until I sit on the wrong side of them. Recently I had to get glasses because I have developed amblyopia that made me see double (I have overcompensated for my lack of sight on the left with my right eye, and my left eye has become weak), and I do get headaches if I sit too far back in class or if I try to look left for too long. I also notice my vision gets worse as the day goes on, but really the most annoying thing I struggle with is not being able to lay down while watching TV. It has its annoyances, but nothing that can’t be adjusted for, and I have even come to enjoy the unique little eye condition as it can be a fun conversation topic.