In Their Own Words: Erin Scala, 27, Baldwinsville, New York
pigmentosa, or RP, a retinal disease which causes
progressive vision loss, beginning with night and peripheral
vision, and leading, eventually, to total blindness.
Diagnosis: I was only 4 at the time, and from what I’ve been told, if I dropped something, like a marble or a ball thrown at me, I wouldn’t always find it. So we went to a couple doctors, including a specialist in New York City, who confirmed it was retinitis pigmentosa.
Vision loss: Growing up, I played soccer for nine years, I played street hockey, I rode my bike. So it wasn’t a big deal. About 10th grade was when I started using large-print books. And I couldn’t read for very long; everything would go blurry, and I’d get a headache. A teacher’s assistant read me tests and enlarged my homework assignments—things like that.
Over the last six or seven years, my sight has gradually gotten worse. Right now, I can see light and dark and some random movement. But it’s not like I can distinguish, say, a red car driving by.
Living with RP: I use a cane. I live 20 minutes outside Syracuse, so I rely on family and friends to drive me places. I also have an application in to go to guide-dog school.
As a kid, I always wanted to be a police officer. When I realized that was something I wouldn’t be able to do, it bummed me out. But, at the same time, there are so many other things I can do. So I deal with it and have fun, because I can’t change it.
I went to college and got a degree in criminal justice, and did internships with the DA’s office, the probation office, and a private security firm to see what I wanted to do. I enjoy working with kids, so I’ll soon start a job working at a facility for troubled teens. I’ll help them find jobs and stay on the right track. It’ll be a challenge, but that’s what I like.
Sporting life: I snowboard, run, ride a bike and do martial arts. I’ve participated in two Iron Girls, the last one just a couple weeks ago. There were three events—an 800-meter swim, a 19-mile bike ride and a 5K run. I did it with a partner, who guided me through everything. I finished 256th out of 2,000.
My next big thing is training for the tandem bike racing event at the Paralympic Games in Rio de Janeiro in 2016. I go to the Olympic training center in Colorado Springs, Colorado, in September. I’ll be there for a week with my pilot, who’s sighted. We’ll bike all day and have one time trial. If we do well, we’ll get the attention of the Team USA coaches and race elsewhere and possibly qualify for the games
Getting involved with FFB: My parents joined soon after I was diagnosed. They thought, “We need to figure out more about this—what does RP mean, can you treat it?” So they started a Foundation chapter in Syracuse and hosted an annual golf tournament, with all the proceeds going to FFB. We’ve also participated in the Western New York VisionWalk.
Two years ago, at the Foundation’s annual conference, I participated in a low vision cooking session with my sister Andrea, who’s a chef. And, this past June, I was at VISIONS 2013. I’m always interested to hear about stem cell and gene therapies, and of course the Argus II retinal prosthesis. There’s, like, a million different things going on.
As my dad says, “We’ve gone from mice to men,” meaning, when I was young, researchers were experimenting with potential treatments on mice. Now, they’re doing it with humans, which is a huge step. It’s incredible to hear all the different things the Foundation is working on.