Part 1: Life With Duanes Syndrome, Positives, Negatives, and What I'm Doing About It.
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!
Please continue to email me!
Update: September 16, 2017
Currently as I sit in a bowling alley thinking about all the people who have reached out to me in regards to Duanes, I can't help but wonder how many of us are out there. I've seen similar articles from other people and I can't help but feel like there is so much false information out there.
Surgery may not need to be mandatory. Most people who have duanes never have surgery and I have yet to meet ANYONE who has had surgery and has not developed a worse condition. People with chronic stys, severe head tilts, and even vision loss. We cannot look in one direction without moving our heads. It's not the end of the world and it DOES get easier to deal with. I PROMISE !!! PARENTS, if your kid has Duanes please do not jump to surgery. There are no cures for us. We are unique, we do not need curing please don't risk hurting your kid worse than what they are already.
Anyway, since my last update I have graduated college at Kent State University. I am currently pregnant, and no there is no link in hereditary. I am 6 months and hoping for a happy healthy baby and will know more in January when it's born.
I still hate taking pictures. It's my biggest thing. I hate my eye retraction so much. I plan to marry the father of my child one day but worry so much about how I will look. These pictures last forever both for me and everyone in attendance. They have to see my eye look terrible forever. That's the only reason why I never want to get married.
I was very fortunate as a child, I never developed a head tilt like most of you have. I think it's because I was so worried about fitting in that I forced myself to move my body instead of my face and head. I know I am fortunate but I am always here to help you all.
Love & kisses
© 2011 Catt