The hardest part is taking the first step
I was diagnosed with Keratoconus (KC) in 1996 when I was a teenager. I’d experienced symptoms for the previous two years, but when my vision began to worsen, I was referred to a cornea specialist. At that time, the treatment was to wear RGPs. While the vision was amazing, they were very uncomfortable—I always had to squint, my eyes were sore, painful, and sensitive to light. There were situations that would make my eyes worse, and so had to plan my life around avoiding those things. I needed the RGPs to see, but the longer I kept them in during the day the more excruciating they became – a real catch-22. Leaving them in too long or not getting enough sleep at night had a rollover effect into the next day.
My quality of life with RGPs was not good and by 2002 my vision began to deteriorate again. I underwent a corneal transplant in my left eye in November of that year, which stabilized after a few months. At that time, transplants were the only option to treat KC. I was able to wear glasses again; it was unreal. With the left eye strong enough I no longer needed the RGP in the right eye. From that point on, I swore I was done wearing lenses.
About nine years ago in 2011 or 2012 I had a second transplant. If the left eye ever worsened, it was time to get the right eye seeing again. The recovery time was longer, but I was okay in the end and was able to have a prescription for glasses for both eyes —something I never expected would happen.
In the last two to three years, however, my vision has worsened. I could feel it slipping away. Glasses had reached the limit of what they could correct. My doctor recommended that I try scleral lenses. I was hesitant, the trauma of wearing RGPs made me swear never to wear lenses again. In the end, it must have been something about hitting 40, the onset of dry eye symptoms, and recognizing that my vision would never improve on its own.
Eventually I went in for a scleral lens fitting in New York. I admit that I had a bit of an attitude and was put off from how painful my RGP experience was. At the first fitting I found that my vision was okay, and they were more comfortable, but the process of inserting them in and caring for them was offputting. With RGPs you could just pop them in your eyes. The deciding factor was that my insurance didn’t cover the sclerals. I said no.
At a follow-up appointment the next month my ophthalmologist recommended BostonSight. I came because I thought I might qualify for assistance, but their finance department was able to work with my insurance company to cover treatment. I went in for a consultation at BostonSight in June of 2019. During the consult, trial devices were placed on my eyes. They were surprisingly comfortable. I was assured that the comfort would improve with a device custom-designed for my eye. Still, I dragged my feet. In the past few months I’ve had to acknowledge there was no other option than PROSE if I wanted to see better. I had put it off for too long and needed my vision to improve. I was pessimistic, but I was out of excuses. In the end, accepting reality is what helped me. I was lucky that PROSE was an option for me. I realized I had control over my vision and needed to do this if I wanted better quality of life. I had to make up my mind and be thankful that I still had a solution that could help. Even towards the beginning of the week when I was feeling down, the technicians reminded me that I had everything going for me and could figure this out with enough practice.
I didn’t know what to expect during treatment, and was fearful, but reading more about the positives of treatment really encouraged me. My family is a wonderful support system. I’ve even found other random people with Keratoconus just by talking about it; networking with other people who have similar issues has helped me feel less alone. If I can help someone else by sharing my story I’m all for that.
I never realized how much I could gain with PROSE or how good the results could be. It’s nonsensical to think that a piece of plastic in my eye could cause this much of a difference, but it does. My advice to others is to explore your treatment options without dragging your feet like I did. Do your research and connect to other patients, but don’t wait. Even though I am still going through treatment, I realize I was able to overcome my fears with the encouragement of everyone at BostonSight.