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Keratoconus Journey: Luke

Luke’s journey began at a young age. In 2nd grade, he started complaining of general vision issues, including blurry and double vision. That was when his mom took him to a Walmart Vision Center, where an optometrist fitted Luke with glasses to help him see. In 4th grade, after his family moved to southeast Michigan, they suspected that Luke’s vision was getting worse when his grandfather asked him to thread a needle, but despite his best efforts, he simply couldn’t. That was when his dad took him to an experienced local optometrist, Dr. Christine Curcione, who recommended Luke begin a year of regular vision therapy to train and strengthen the muscles in his eyes.

Over the next five or six years, as he progressed through middle school and into high school, Luke returned to the optometrist every couple of years for a routine vision exam. There he would receive an updated contact lens prescription, which always seemed to become less effective by about seven or eight months later. Despite this, Luke and his parents never suspected anything was seriously wrong and assumed that each stronger prescription was just par for the course.

Rolling With the Punches

Whether he realized it or not, over time Luke’s vision began to impact other aspects of his life — the most consequential being school. Each year, seeing the board became a little bit more challenging, forcing him to squint and making it difficult to focus during class. When reading a book, Luke often found himself skipping lines. Some of his teachers recommended that he be tested for attention deficit hyperactivity disorder (ADHD), but his parents — teachers themselves — believed it was something else causing their son to be distracted.

As he got older and entered high school, Luke’s worsening vision and the corresponding symptoms started to become more prominent. Once or twice a week, by the end of the day, Luke would experience debilitating headaches. Although some of his teachers thought he was making them up to avoid work or taking tests, they persisted at home. Whether he was watching movies with his family, or hunting with his dad, Luke’s headaches or his inability to see would force them to take breaks and step away from the television or activity for a little while. While working on small car and motor engines during his free time, his friends knew they needed to perform the more detailed parts of the work because Luke couldn’t see as clearly. Furthermore, as a talented football player on his team’s defensive line, Luke’s vision began impacting his ability to play the sport he loves when his peripheral vision began deteriorating.

Answers From Likely Places

The final straw came in the summer of 2020 while visiting his grandparents for the Fourth of July, when Luke’s grandmother noticed he was having serious difficulty reading a text message on his phone and brought her concern up to his dad. That was when his dad realized that they needed to get to the bottom of Luke’s vision issues. He reached out to Dr. Curcione to move up his next appointment, and after carefully examining Luke’s eye, Dr. Curcione diagnosed him with keratoconus in both eyes — a progressive eye disease in which the normally round cornea thins and begins to bulge into a cone-like shape, causing distorted vision.

After years of questions and concerns about Luke’s vision, it was the first time that his father had heard of the condition, but it did not surprise him. Mat felt immense relief to finally receive an accurate diagnosis for his son, and even more hopeful when Dr. Curcione referred them to a local ophthalmologist at Specialty Eye Institute for more information about a potential treatment. There Dr. Luis Gago recommended FDA-approved cross-linking for Luke in his more-progressed left eye— the first and only therapeutic treatment that stiffens the cornea to slow or halt the progression of keratoconus. Mat and Luke scheduled the procedure for a few weeks later, feeling no hesitation. In the meantime, they did their research online to educate themselves on the risks and potential side effects and what to expect during and after the treatment.

Taking His Shot

In August of 2020, Luke underwent FDA-approved cross-linking in his left eye. He experienced no pain during the procedure, just minimal discomfort from the tool used to hold his eye open. For the next few days, Luke used his prescription eye drops as directed. When he returned a week later for his follow up appointment, Dr. Gago was pleased with the results and how the eye was healing. In the fall of 2020, Luke will return to Dr. Curcione where he will be fitted for a scleral contact lens to improve his vision. His doctors will also continue to monitor the progression in his right eye, and Luke says he wouldn’t hesitate to receive FDA-approved cross-linking again in his other eye if required.

Since undergoing the procedure, Luke is now looking forward to the upcoming football season. Heading into his junior year of high school, he is optimistic that once he has the appropriate contact lenses, he will be better equipped to excel in school. He says that for so long he was just adapting and “rolling with the punches” and is now looking forward to living his best life.

Both he and his dad say that after years of questions and no answers for Luke’s vision challenges, they are comforted to know that he is now receiving the best care and are excited about what his future holds.

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.