The story of Dana
After daily struggle with Duane syndrome for 30 years I finally won the fight
This is my story
My name is Dana, I’m Palestinian by blood, Jordanian by passport, born and raised in Dubai, and I live in Paris. I’m 31 years old; I’m a freelance journalist and a PHD student. My life has completely changed in 15/09/2017. In that day I did an eye surgery that transformed my life. For the first time ever I can look straight in the mirror and not see double. It’s so magical and so beautiful.
In fact, I was born with a rare eye condition that a few people know about. Even ophthalmologists don’t know anything about it. It’s called Duane syndrome or Stilling Duane syndrome. In my case, the movement of my left eye is limited to the right side; I can’t move my eye neither to the center nor to the left. It basically means that my eye is partially paralyzed and I see double whenever I look straight or to the left.
Over the years, I have seen many ophthalmologists; they always say that there is no cure and that I just have to live with it. All my life I have my head turned to the right so I would avoid seeing double but this causes me neck pain and headaches. It’s a painful experience whenever someone sits on my left because it means that I have to see this person double.
It’s terrible when I go to the movies and the only seats available are on the center or on the right. As I grew up I hated the camera, especially when I had to go take pictures for my passport. This is how it goes: the camera guy askes me to look straight at the camera and then he says you are not looking at it. I tell him I don’t know how to hold my head straight, so he starts guiding me and saying a bit to the right, a bit to the left, then when my head is where he wants it, he takes the photo. Of course, it’s always a bad experience because I see double, I’m stressed, confused and embraced.
But the longest time where I had to look straight and of course see double was when I took this camera test at work in order to see if I can become a TV news anchor. For 15 minutes, I had to look straight at the I cue to read the news. Seeing two I cues, two readings was terrible and I was never sure whether my head was straight or not. But luckily, it was indeed.
Walking out of the studio, I had terrible headaches, but I was so proud of my camera test, thinking that I’m probably the only Duane syndrome patient who takes a camera test and stands to see double for 15 minutes long.
That was 2 years ago. At that time I went to see an ophthalmologist that I picked up randomly and this time he said there is probably one surgeon in all Paris that knows exactly what you have, go see him. I took an appointment, I went to see him. The surgeon said that he could have my eyes aligned so I would be able to look straight without seeing double. But there is a catch. In order to have the best result he will operate under a topical anesthesia which means that I will be awake and I could feel some pain. But in this kind of anesthesia, we will be able to test the results right away during surgery which might avoid me a second operation. On top of that, if the operation doesn’t work I will have to wait for 3 months before taking another surgery and during that time I will be seeing double all the time even to the right.
That day, I walked out a bit shaky thinking that I could’t do it. But as days went by, my neck pain was getting worse, so as the headaches and frustration took over. Then one day I thought it’s now or never. It took me 2 years to pull myself together and decide to do it. I finally did and I couldn’t be any happier.
I spent 30 years trying to find a solution to my Duane syndrome and I wish to spend the next 30 years informing people about Duane Syndrome and how it affects people’s lives.
To people like me, you should know that even though Duane syndrome can’t be cured, it can be defeated.