By: Robin Altman
I was in my early 30s when I first learned I was living with keratoconus, but the journey to finding a treatment option that was right for me wasn’t simple.
Finding the Right Fit
When I was about 10 years old, I got my first pair of glasses to help with nearsightedness. For the next 20 years I wore my glasses and soft lenses all the time. It wasn’t until I was in my 30s that I learned I was not just suffering from nearsightedness. During one of my regular eye appointments, my ophthalmologist told me she believed I had keratoconus, a progressive condition I had never heard of before.
Eventually, my keratoconus progressed to the point where my glasses and soft contacts no longer helped my vision and I needed to switch to Rigid Gas Permeable (RGP) lenses instead. A few years later, an optometrist told me I also had residual astigmatism, which meant I also needed glasses to help
me see at a distance on top of my RGP lenses. This was in the late 1990s, early 2000s when the only surgical procedure available was a corneal transplant, which I didn’t want to receive. At the time, cross-linking wasn’t even an option.
Doing What Felt Right
The reason I decided against a corneal transplant is simple – you only have one pair of eyes. I wasn’t putting a scalpel to mine unless there was a very persuasive reason to do so. Until my vision got to the point where I was entirely unable to wear any kind of glasses or contact lenses, I was unwilling to consider the transplant option.
My aversion to the eye procedure had nothing to do with not trusting my doctor. This skepticism came from a family situation – my mom had retinal cancer. She has a prosthetic eye and it’s taken an emotional toll on her, and by extension, our whole family. While intellectually I know that her retinal cancer has nothing to do with my corneal degeneration, emotionally, it was all lumped together for me.
About two years ago, I switched to scleral lenses at the advice of my younger son’s best friend, an optometry student at The State University of New York (SUNY) and received my first pair of trial lenses in March 2017.
Over the last 20 years, my keratoconus has been annoying and frustrating, to say the least. However, it has been manageable. I am constantly using drops and nearly always wearing some kind of glasses – reading glasses, computer glasses, or sunglasses – over my scleral lenses. I also have another pair of glasses that correct my right eye only, to the best degree possible, which I keep in my car and take with me when I travel, along with a backup pair of scleral lenses. Like I said – it’s burdensome.
A Genetic Component
But just when I started to manage my keratoconus, I discovered my older son was also living with this condition. Knowing there was a genetic component to keratoconus, I knew there was a possibility that my sons could also be faced with this condition. Because of this, I was always vigilant about my sons’ eye health, and they were routinely monitored at their medical exams.
My older son was in his late 20s when he started to notice an issue with his vision — only a few years younger than I was when diagnosed. The only difference is that he had never had any vision issues prior to this. Having grown up watching me face keratoconus, I was proud that he chose a medical team and treatment plan that worked for him. I was grateful that he was able to halt the progression of his keratoconus with cross-linking at an early stage. However, given my aversion to eye surgeries, I was still somewhat uncomfortable with the procedure, but knew it was the best treatment option for him. While surgery isn’t the right option for everyone, such as myself, I’m grateful that this treatment is available for patients who medically need it.
Despite everything I have gone through, I still live a pretty normal life. My keratoconus has become focused on management, just as you would manage other conditions like cholesterol, diabetes, hearing loss, etc.
Little lifestyle changes can go a long way and technology has made things so much easier for me. As a legal assistant to my husband, I mostly work from home and while keratoconus hasn’t kept me from my work, it has made things difficult at times — especially when it comes to seeing my computer and phone screens. In order for me to see screens without issues, I need to keep my screen really big, use large fonts, and always keep a pair of computer and/or reading glasses on hand.
Having worn contact lenses since 1980, it’s no longer a big deal to me — they’ve just gotten larger and harder. Yes, it is an annoying and expensive condition, but it’s not life-threatening and for that I am thankful. In the last year and a half, I’ve lost three friends to cancer who were between the ages of 58 and 65 years old. I’m 58. While managing my keratoconus may be annoying, it pales in comparison to what others may be going through.
I have been and will be dealing with a lifetime of keratoconus management from lenses and adjustments to scheduling necessary appointments. I know I could just have received corneal transplants, and that is still an option for me in the future, but for now, that procedure still doesn’t sit right with me. I’ve come to the conclusion that I am more fearful of the surgical procedure than I am exhausted by the process of living as a keratoconus patient.
I’m so glad that for the next generations of keratoconus patients, including my son, there are early diagnosis and treatment options available to manage the condition, slow or halt the progression, and protect one’s vision.
UPDATE: Since I first drafted this blog entry, I had another appointment with my ophthalmologist and was shocked to learn that my keratoconus is continuing to progress, making me a part of the rare, very small percentage of patients whose condition worsens after the age of 50. My doctor was very blunt with me saying that since there has been a marked progression (approximately 20% worse) in the past four years, he foresees this continuing to be the case. Because my disease was progressing – I was eligible for CXL so I made the decision to have that done instead of a transplant.