As a parent of a high school student, I knew my son would face many of the typical challenges that a teenager encounters during that time, such as navigating exams, sports, and friendships. However, I did not anticipate that a progressive eye condition would be an additional hurdle. After learning that Louis was living with progressive keratoconus, which could result in significant vision loss if left untreated, we knew that we needed to take control of the situation quickly.

A Shocking Turn of Events

Louis has always been very active – he enjoys baseball, cross country, lifeguarding, and archery. I had no idea that Louis had issues with his eyesight until he failed his high school vision screening and the school nurse sent home a referral to a local optometrist.

When we made an appointment to meet with Dr. Emily Shull at SIGHT Eyewear and Eyecare, we assumed Louis simply needed glasses. However, I was shocked when we learned that Louis had progressive keratoconus. We had never heard of the condition before, and some of the possible treatments that Dr. Shull mentioned – such as a corneal transplant – sounded extreme. We went from expecting that he would need glasses to thinking he could need a corneal transplant; it was surreal.

In retrospect, I put the pieces together from his childhood – Louis was clumsy, struggled to catch baseballs, and often missed high fives. As he got older, he stopped playing baseball because it was difficult to see the ball, and lifeguarding became a struggle as it was hard for him to see the depth of the swimmers in the water. After reflecting on all of this, Louis’ progressive keratoconus diagnosis began to make sense. So, when Dr. Shull referred Louis to Dr. Adam Kaufman, an ophthalmologist at the Cincinnati Eye Institute, to learn more about his condition and the available treatment options, I knew we needed to make an appointment.

Finding Answers and Direction

During our first appointment with Dr. Kaufman, we were surprised to discover that Louis was nearly blind in his right eye. After informing Dr. Kaufman of some of the vision issues Louis had experienced, Dr. Kaufman told us he had been overcompensating with his left eye, as he had not realized how poor his vision had become in his right. Dr. Kaufman then recommended that Louis receive the iLink​​® FDA-approved cross-linking procedure in his right eye to slow or halt the progression of his keratoconus. Although I felt optimistic, I was a little hesitant at first because I wondered what the best option would be for my son, who was 15 years old at the time. I felt reassured after Dr. Kaufman took the time to answer all of our questions. Then, once we returned home from the appointment, I conducted my research online. After learning more about iLink® and that it was a minimally invasive procedure, we decided this treatment was right for Louis. In September of 2021, Louis received iLink® in his right eye.

Regaining Confidence

Following the procedure, Louis was fitted for a gas permeable contact lens in his right eye, which has improved his vision[1][2]. He is once again able to participate in and enjoy all of his favorite activities, including baseball and lifeguarding. From my perspective, it feels like all of Louis’ opportunities in life have opened up. Now that Louis’ keratoconus has been treated with iLink and his vision has improved with the contact lens, he is more confident and enthusiastic to try new things and experience different opportunities.

This journey has been a learning experience not only for Louis but also for our family. As the oldest of three boys, Louis’ younger brothers have learned more about disabilities and physical challenges after watching Louis struggle with his vision. They have been very supportive along the way, which has helped immensely. Since we learned that keratoconus may be genetic, our family knows what to look for if anyone else is experiencing similar symptoms to Louis or any other behavior that may indicate a vision issue. Together, I hope we can help spread awareness of keratoconus and make more people understand the available treatment options, such as iLink®.

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[1] Kreps, E. O., Pesudovs, K., Claerhout, I., & Koppen, C. (2021). Mini-Scleral Lenses Improve Vision-Related Quality of Life in Keratoconus. Cornea, 40(7), 859–864.

[2] Baudin, F., Chemaly, et al.  (2021). Quality-of-Life Improvement After Scleral Lens Fitting in Patients With Keratoconus. Eye & contact lens, 47(9), 520–525.

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