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Keratoconus Journey: Casey

Casey noticed his vision was blurry at just 15 years old. An initial diagnosis determined he had a cataract, but after undergoing the recommended corrective surgery, his vision only continued to decline. A second opinion found that he was in fact living with keratoconus.

Learning to Cope

After an unsuccessful cataract surgery in 10th grade, Casey spent the rest of high school learning to cope with his deteriorating vision. With his vision rapidly declining in his left eye and minor blurred vision in his right eye, Casey had to get creative to manage his normal everyday activities. He used his cell phone camera’s zoom as a magnifying glass to read anything he couldn’t see. If he wanted to read a book, he either had to hold the book right in front of his eyes or listen to audiobooks. He also struggled to drive. To try to compensate for his poor eyesight, Casey even memorized vision charts at the eye doctor’s office to make it seem like his vision wasn’t getting worse.

Those close to Casey could tell something was up with his eyesight, but they didn’t know to what extent and just thought he needed glasses. Casey knew trying to find a solution to his vision problems could cost money, and growing up with a single mother, he did not want to be a burden. So, he simply avoided talking about it and effectively hid his progressively worsening vision from his family and his peers.

After the military rejected Casey during his senior year of high school due to what they diagnosed as a ‘degenerative eye disease’, Casey began preparing for the worst. Anticipating blindness, he started teaching himself to read and write braille. Casey was determined not to let his eyesight affect his future, so he began preparing himself to become a successful blind person. However, he found this to be an incredibly depressing experience.

Getting Some Answers

Compelled to make something of himself despite his vision issues, Casey enrolled in college, where he double-majored in criminal justice and psychology and double-minored in child adolescent development and international conflict. However, life as a student was becoming difficult to manage due to his worsening vision issues, resulting in Casey taking a break from school. At the time, he was living in Missouri with his aunt who noticed his vision was worsening. She knew that Casey needed to visit the eye doctor once again to find out what was wrong.

After years of not knowing what was causing his deteriorating vision, Casey was referred to Mercy Hospital in Springfield and was finally diagnosed with keratoconus in May of 2019. Instead of feeling relief to finally know what was going on, Casey felt like he had caused his keratoconus. The doctor who diagnosed Casey explained there are certain risk factors for keratoconus, such as a family history of the disease and excessive and vigorous rubbing of the eyes. Casey has allergies and eczema, both of which cause him to frequently rub his eyes, so he assumed he had caused his keratoconus and he worried he may never be able to see clearly again.

Luckily, Casey was then referred to experienced ophthalmologist, Dr. Shachar Tauber, who assured Casey that he was not going to become blind and that there was a procedure available that could slow or halt the progression of his keratoconus. Knowing there was a way to stop the progression came as a relief for Casey, but he was skeptical at first because of his unsuccessful cataract surgery when he was 15. However, he decided that the treatment was the best option to preserve his vision, so he scheduled the procedure.

With encouragement from Dr. Tauber, Casey underwent iLink® FDA-approved cross-linking in his left eye in June of 2020. He was the first patient of Dr. Tauber’s to undergo the procedure. Following the procedure, Casey was fitted with scleral contact lenses in both eyes to improve his vision. The keratoconus in Casey’s right eye had not progressed as much at the time and did not require surgery. His doctor is continuing to monitor the progression and may treat his right eye eventually if appropriate.

Looking to the Future

Following the FDA-approved cross-linking procedure in his left eye and being properly fitted with scleral lenses, Casey started to feel like doors were opening for him and that he could do so many things that he wasn’t able to previously. The same eye that caused him to be rejected from the military was now his better eye. He began driving comfortably and no longer needed to use his cell phone as a magnifying glass or listen to audiobooks out of necessity. He could make out people’s faces without having to squint to see them. Most significantly, Casey put his braille studies to rest.

Next year, Casey even has plans to return to college, and he hopes to add another major to his studies. He aims to ultimately run for office to become a Senator in Georgia. In addition, Casey would love to be on TV one day, or get a side gig as a motivational speaker.

With his vision issues under control, Casey is thrilled to have his life back on track. He’s looking forward to living a full life, and pursuing many of his dreams along the way. He recommends the FDA-approved cross-linking procedure to anyone who is struggling with progressive keratoconus, and he now lives by the motto, “Why waste time adapting to life when you don’t have to?”

Find a Cornea Cross-Linking Specialist Near You:

Search our physician locator to find a corneal specialist who is familiar with treating progressive keratoconus.

The results described on this site are based on data collected regarding short- and intermediate-term efficacy of treatment. Individual results are not guaranteed and may vary.

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Important Safety Information

Ulcerative keratitis, a potentially serious eye infection, can occur. Your doctor should monitor defects in the outermost corneal layer of the eye for resolution.

The most common ocular side effect is haze. Other ocular side effects include inflammation, fine white lines, dry eye, disruption of surface cells, eye pain, light sensitivity, reduced sharpness of vision, and blurred vision. The risk information provided here is not comprehensive. To learn more, talk to your healthcare provider.

Go to Prescribing Info to obtain the FDA-approved product labeling.

You are encouraged to report all side effects to the FDA. Visit www.fda.gov/safety/medwatch-fda-safety-information-and-adverse-event-reporting-program, or call 1-800-FDA-1088.

Approved Uses

Photrexa® Viscous (riboflavin 5’-phosphate in 20% dextran ophthalmic solution) and Photrexa® (riboflavin 5’-phosphate ophthalmic solution) are used with the KXL® System in corneal cross-linking to treat eyes in which the cornea, the clear dome shaped surface that covers the front of the eye, has been weakened from the progression of the disease keratoconus or following refractive surgery, a method for correcting or improving your vision.

Tell your healthcare provider if you are pregnant or plan to become pregnant.