In Their Own Words: Carley Colton, 29, Houston, Texas
Disease: Stargardt disease, the juvenile version of age-related macular degeneration, characterized, initially, by the loss of central vision.
Diagnosis: I was diagnosed right after my freshman year of college, in 2003. I was on a track to be a doctor. Because of my diagnosis, I had to reevaluate my situation and get to the heart of what I really want to do, which is help people. So I took that and ran with it, and I’m now a 1st grade teacher. I’ve been teaching for seven years. I had no idea what Stargardt disease was when I was diagnosed. I learned through my doctor first, and then he directed me to the Foundation Fighting Blindness, where I found out even more information.
Your Vision: With Stargardt, it’s basically like there’s a hole in my vision. So whenever I look at things or people, I have to look around them to try to gain the whole picture. When I look directly at someone’s face, I can see an outline, but I cannot see details. I have no idea what color your eyes are. I can gain a little bit more vision looking peripherally, but, again, I still can’t tell the color of a person’s eyes.
My vision has definitely gotten worse since I was diagnosed. I started out 20/40, 20/60 [normal vision is 20/20], but I was just diagnosed as being legally blind. I’m now 20/200. I don’t use a cane, and, fortunately, I am still able to drive with the use of adaptive technology, a bioptic lens. I also use other adaptive technologies in my day-to-day life, such as CCTVs and pocket viewers, things like that.
When it comes to teaching, I don’t necessarily tell my students what I have, but I do let them know about the Foundation and that I participate as a volunteer and let them know what that means.
Getting Involved with FFB: I’ve been involved in [the Foundation’s 5K] VisionWalks in Houston and with the chapter there for six years. Early on, I volunteered to help out in whatever capacity they needed, and the Foundation has made use of that, for sure. I’ve been president of the chapter for more than a year and a half, and I won its Front Lines Fan competition on Facebook in the spring, which enabled me to go to the VISIONS 2013 annual conference in late June.
One of the main things I want to do is grow our Houston chapter. I feel like we’ve come a long way but still have a long way to go. I want to see that through. And at VISIONS, I learned a lot of great leadership tips and techniques, but I also learned about the many research advancements going on.
The Future: I tell myself what I tell anyone who’s been recently diagnosed or who’s losing vision—just to always follow your heart and your dreams. And this is for the parents of the affected as well. Just always encourage your children. I know my parents have encouraged me, and friends have also been very supportive. Just don’t give up. I believe that there is a cure, and that’s what we’re working toward at the Foundation Fighting Blindness. There is hope. Just always believe that; don’t give up.