Keratoconus, a Patient’s Perspective
BY JASON MARSACK, PHD
Can I ask you something? In my February Refractive Focus column, I challenged you to a word association game related to keratoconus. In this month’s column, I will again visit the topic of keratoconus. However, I would first like to open with a question. This question is admittedly difficult to answer. Yet, at the same time, it has thousands of correct answers. It is a question that is asked every day, often repeatedly by some, while others may never have any reason to consider it. The question I would like to start with is:
“What does it mean to an individual to have keratoconus?”
Typically, when I write these Refractive Focus columns, I am wearing my “researcher” hat (i.e., from the perspective of someone who loves hypotheses and the data needed to test them). But today, I write this column wearing a different hat. With this column, I am wearing my “patient” hat. I answer the question I posed above from my own personal, 20-year-long experience as an individual who has keratoconus.
I had tried a number of different vision corrections with limited success. What this limited success meant most for me was that I would often find myself thinking about the fact that I had keratoconus. In fact, when my mind was left free to drift, I would often catch myself comparing the visual quality between my two eyes (first closing one eye, then the other) and asking myself “has my vision gotten worse?”
In the early 2000s (I was an engineering graduate student at the time), one contact lens correction prescribed to me was superior to those that I had experienced up until that point. Was it perfect? Decidedly not.
But, I remember realizing, as I walked to the laboratory one day later that week, that it had been a long time since I had thought about my vision. In fact, when I made this realization, I remember that I was staring at—of all things—a trash dumpster.
At the time, I did not question “why” I found the lenses satisfactory; I honestly just felt lucky and thankful. But in retrospect, what I did not know then that I believe to be true now is that these lenses met my needs in three key areas that were important to me: cost, comfort, and performance.
It can be expensive to have keratoconus. But given my relatively meager financial circumstances as an engineering graduate student, these contact lenses, and the care system that went with them, were affordable for me.
One of the consequences of wearing contact lenses for me that was most difficult was the fact that my eyes often got red and uncomfortable after several hours of wear. I distinctly remember one of my classmates commenting on the fact that my eyes were bloodshot, which made me feel self-conscious. Fortunately, I was able to wear these lenses for a longer period of time before experiencing discomfort and/or injection.
In terms of visual performance, these lenses did not provide me with the best vision that I had ever experienced with contact lenses, but they didn’t have to. For me, the vision was sufficient. More specifically, the vision that I was able to attain met my need to not be constantly reminded that I had keratoconus. In particular, there was symmetry in the residual blur that I experienced, which for me made it easier to ignore.
Others may not have been able to tolerate this blur. On the other hand, perhaps others could tolerate much, much more.
For me personally, success meant meeting my specific thresholds related to cost, comfort, and performance. While I do think that these categories are important in general, I believe other categories may be equally or more important to other individuals. And I believe that this combination of acceptable thresholds was unique to me, given my disease severity and my circumstances.
I do not believe that my outcome was somehow indicative of what we should define as success for other individuals who have keratoconus. Nor do I think the type of contact lens was particularly important (which is why I have not mentioned it here). The simple fact was that exceeding these thresholds left me content with the correction.
I consider myself extremely fortunate and thankful to those professionals involved in my care. In addition, I know that, despite the best efforts of clinicians, industry, advocates, and the patients themselves, many individuals who have keratoconus may not currently be able to satisfy the thresholds that are most important to them. After all, keratoconus is a very difficult disease to manage, with unique challenges in each individual case.
In my past Refractive Focus columns, I have written about wavefront-guided corrections, and I have dedicated a large portion of my life to that topic. I want to be clear that the contact lenses I was referencing above were not wavefront-guided lenses; they were contact lenses that were clinically available at that time. I make this point because, while I do believe that wavefront-guided lenses will have an important place in the clinic, I am not an advocate for wavefront-guided technology replacing existing methods of vision correction.
Rather, I believe we should be working to understand, advance, and integrate all existing and emerging technologies in a manner that best meets the needs of each individual in the exam chair. Realistically, each correction offered in the clinic has advantages and trade-offs.
Therefore, I consider that newer technologies should complement existing technologies. I envision a future in which an expanding number of vision correction modalities—not fewer—are available to patients who have keratoconus.
Returning to the original question posed at the start of this column, “What does it mean to an individual to have keratoconus?” I hope I have succeeded in communicating, through my own experience, that I believe the answer to be unique to each individual who has the disease. Each individual patient, as well as the clinicians, industry partners, researchers, and advocates who tirelessly dedicate themselves to improving the lives of this patient population, knows intuitively that the solution to the problems faced by each individual is to some degree unique.
I look forward to the future with optimism as the field continues to advance with technology, research, clinical methods, and advocacy—with the common goal of meeting the individual needs of an ever-increasing segment of this patient population.
Dr. Marsack completed a PhD in Physiological Optics and Vision Science at The University of Houston, College of Optometry, where he is currently a member of the faculty. He is affiliated with the Visual Optics Institute and The Ocular Surface Institute. His research interests include optical aberration of the eye, custom and pseudo-custom correction of optical aberration, visual performance and optically-based metrics predictive of visual performance.