Ryan Murphy is a 26-year-old college graduate of California State University, Northridge who lives by the motto, “health is wealth”. He is passionate about health and fitness and enjoys spending time outdoors with friends. However, an unexpected vision challenge threatened Ryan’s healthy and active lifestyle.
After noticing he was struggling to see clearly when driving at night and finding it difficult to see the board during class, Ryan decided to take control of his eye health and made an appointment for an eye exam. During his appointment, Ryan was given a prescription for eyeglasses and sent on his way. Although they did temporarily help his vision, Ryan found the glasses to be cumbersome while working out at the gym.
In search of a better solution, Ryan returned to the doctor and was shocked when he was diagnosed with progressive keratoconus. He was then referred to Dr. Duna Raoof at NVision in Newport Beach, CA for further evaluation and treatment. During the appointment, Ryan learned about iLink® FDA-approved cross-linking, which is proven to slow or halt the progression of keratoconus to help preserve vision. Although Ryan was skeptical at first, he remained positive and did decide to move forward with the procedures.
We recently connected with Ryan to discuss his experience with progressive keratoconus and how iLink® has helped him halt the progression of his condition. Now, with the help of scleral lenses[1], Ryan is back to enjoying his workouts and appreciating his health more than ever before. Watch the full video below to learn more!
For additional information on keratoconus and iLink® FDA-approved cross-linking, or to read more Keratoconus Journeys like Ryan’s, follow us on Twitter, Instagram, and Facebook.
[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.
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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.
An Unusual College Experience
Going to college is a big transition for any teenager. The first year is typically filled with new feelings, challenges and opportunities that shape the kind of adult you will eventually become. But for Nishi, dealing with a keratoconus diagnosis was a challenge she hadn’t expected.
Growing up Nishi had 20/20 vision and was taken by surprise when she suddenly had trouble seeing the board in her calculus class. To make sure she didn’t fall behind, she started sitting in the front of the class, relied on friends to read things off the board, and closed her left eye to help bring her vision into focus. While her grades never suffered, Nishi had to spend more time doing her schoolwork to make sure she was keeping up with class expectations.
Nishi wanted to understand what was causing the change to her vision, so she went for an eye exam. Her optometrist diagnosed her with keratoconus and then referred her to a specialist for further evaluation. It was during this appointment that she learned about corneal cross-linking, a procedure that could halt the progression of her keratoconus. Nishi’s left eye was deteriorating at a very fast pace, and her physician felt this treatment was the best option for Nishi’s condition and recommended her for a clinical trial. However, Nishi wanted to wait until the procedure received FDA approval in the United States.
A Waiting Game
While waiting for the procedure to receive FDA approval, Nishi was given a pair of glasses to help her blurry vision. The glasses only improved her vision slightly, but Nishi relied on them for everything, especially when it came to driving and traveling. She had difficulty reading street signs, and headlights bothered her eyes while driving at night.
Since being diagnosed with keratoconus, Nishi realized how much the condition changed the way she was living her life. Familiarity became very important to her, so she had to be more selective when deciding where to travel. She was also missing out on social activities, declining a nighttime maze with her friends because she wasn’t confident that she could rely on her vision during the activity.
Keratoconus also took an emotional toll on her family. Before her diagnosis, no one in her family had heard of keratoconus. Nishi’s mom found it extremely difficult watching her daughter struggle. She wished there was an available procedure to treat her keratoconus sooner and avoid risking further progression of the condition.
Looking Toward the Future
In November 2016, about seven months after cross-linking became FDA approved and over two years after her initial diagnosis, Nishi received the procedure in her left eye. About two years later, in October 2018, she also received cross-linking on her right eye. Nishi’s recovery was not too painful and primarily resulted from the bandage contact lens that was used to protect her eye after the treatment. Nishi also experienced blurry vision following her second procedure, which her glasses did little to help. By December 2018, a month after cross-linking, Nishi’s post-procedure blurriness had improved and her vision had stabilized.
Now finished with college, Nishi is a Business Analyst for an Internet of Things (IoT) company. In her role, Nishi is constantly looking at her computer and reading barcodes, which can be difficult due to the small size of the numbers. Because the keratoconus in her left eye was far more progressed, Nishi still relies on her right eye much more than her left for reading.
Following cross-linking, Nishi is hopeful that she can reduce the number of visits to her eye doctor and can get one prescription that will last well into the future. Nishi is grateful that cross-linking became available to halt the progression of her keratoconus and is happy in her decision to get the treatment.
Click here to read more KC Journeys.
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.
Road to Self-Advocacy
Bekah went to her local Department of Motor Vehicles (DMV) near Austin, Texas, to renew her expiring driver’s license, but she didn’t expect what would happen next. A 36-year-old mother of four, Bekah had never experienced any vision issues and initially believed the news that she had failed the vision portion of her driver’s license renewal exam to be a fluke from faulty equipment. Nonetheless, she made an appointment with her optometrist to see if there truly was an issue or if she could just return to the DMV to take the test again.
At her optometry appointment, Bekah faced more unexpected news when she was told she had a rare eye disease called keratoconus. The condition causes progressive warping of the cornea, and if left untreated, possible blindness. Unlike many who have to visit doctor after doctor to determine the root cause of their issue, Bekah was fortunate to be diagnosed on her first visit. Her optometrist assured her that she was not yet at risk of losing her vision and that he would be able to fit her for rigid gas permeable (RGP) contact lenses to help correct her vision. Bekah felt relieved and with the help of the contact lenses, she was once again able to pass the vision portion of the driver’s test and renew her license.
After a year of wearing the RGP lenses, she shared with her optometrist that she didn’t believe the lenses were helping her any longer. They decided glasses might be a better route but after a couple months of use, Bekah set them aside for the same reasons she had stopped wearing the lenses – they were not improving her vision.
Life Goes On
For the next few years, Bekah focused on her young family and job as a legal secretary. She placed her keratoconus on the back burner until one day when she found herself relying on a magnifying glass to read the small print of legal documents. At the time of Bekah’s diagnosis, treatment options for keratoconus were very limited and she didn’t know where to turn for help. She began to feel emotional remembering the fear of failing her driver’s test and not being able to drive. Bekah noticed that she would have to renew her license by 2020, a coincidence she found very ironic, and decided she had until then to do something about her condition.
The Path to Cross-Linking
Bekah learned everything she could about keratoconus, Intacs®, and cross-linking. She considered having Intacs surgery first, which is an implantable device that can help restore vision, but ultimately decided not to have the procedure performed.
Still determined, Bekah focused on finding a confident surgeon who was an expert in keratoconus and FDA approved cross-linking, a procedure that strengthens the collagen bonds in the eye that may halt keratoconus progression. Bekah researched and visited countless ophthalmologists all over her state of Texas before finally deciding on a doctor who was part of an ophthalmic group in Houston.
Bekah thought that finding a doctor she was comfortable with would be the hardest part of her journey. However, she quickly discovered that getting authorization by her insurance for FDA approved cross-linking was going to be another challenge prior to her surgery. The doctor’s office submitted a request for authorization to her insurance company, Humana.
After two months of waiting, the insurance company returned a denial and deemed the procedure to be “therapeutic and not medically necessary” and provided feedback that they’d only consider covering the procedure if it was considered medically necessary.
Bekah, who had been living with her declining vision for more than six years and understood the impact a lack of intervention would have, took it upon herself to prove to her insurance company the medical necessity of cross-linking in her situation. She returned to the optometrist who had originally diagnosed her and asked for medical records from all of her past visits. With this information, she filed an appeal with her insurance company.
Another two months passed, and finally, an authorization was returned from Humana approving the cross-linking procedure. However, it was unclear exactly how much of the procedure her insurance company would cover. Shortly after the approval, Bekah received the wonderful news that her cross-linking procedure would be fully reimbursed.
In July 2018, she underwent cross-linking on her left eye.
Getting Back on Track
Bekah was glad to get back to her normal routine following her procedure. Her recovery was slow but she shared her progress via vlogs on social media. Bekah also received magnifying readers to help treat a secondary vision issue that was occurring at the same time. Now, four months later, she is still adjusting to the changes in her vision and is combating some continued haziness.
Her right eye, which was also diagnosed with keratoconus, is being monitored by her doctors for any signs of progression.
One of her 17-year-old triplets has also begun to show early signs of keratoconus but has not been officially diagnosed. The family plans to continue follow up visits with corneal specialists to ensure she receives the best possible eye care.
Click here to read more KC Journeys.
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.
“Just” a Routine Visit to the Eye Doctor
Max was just a typical 15-year-old from Columbus, Ohio when his eye health changed forever. It started with a routine optometrist visit with his older sister, Morgan, to pick up a new prescription for contact lenses. During his eye exam, the doctor became concerned that the shape of Max’s cornea was changing and referred him to the local hospital for further evaluation.
During the second assessment, Max underwent a series of corneal tests that monitor for vision problems and was diagnosed with keratoconus or ‘KC’. His warning signs for keratoconus were slight annoyances that Max had grown used to seeing. As someone who had always worn glasses, he assumed the scratches he saw were actually on his lenses. Now, Max learned that the blemishes he noticed were a result of keratoconus.
Initially, Max wore contacts and soft lenses, which helped his vision, but after speaking with his optometrist he understood that his eyesight was only going to get worse. At the same time Max’s mother, Sandy, and father, Jim, were reading any and all information they could find on the condition and found long-term treatment options available in the U.S. for their son.
The doctor confirmed that Max would not be a candidate for a corneal transplant until his eyesight had deteriorated to the point where his vision was significantly impaired. His only option at this point was watch and wait.
From there, the whole family was left with a series of questions. How fast would Max’s vision deteriorate? Would he be able to take his driver’s test as scheduled in the next year? How would this impact his future and his eventual career? And most distressing, would Max go blind someday, perhaps even soon?
A Transformative Uber Ride
While on vacation in Florida six months after Max’s diagnosis, his family had a chance encounter that reshaped how the family would treat Max’s keratoconus. During a shared Uber ride from the grocery store back to the hotel, Max’s mom, Sandy, found herself seated next to a keratoconus specialist, who also happened to be from Columbus, Ohio. Not only that, but the doctor was staying at their hotel and attending a keratoconus seminar that was being held in the same location. In a wonderful twist of fate, the doctor had just learned about the then newly FDA-approved cross-linking procedure to stop the progression of keratoconus. Following the Uber ride, the specialist gave Sandy the information for a physician in Columbus, Ohio who was offering the latest treatment for keratoconus.
In October, a couple of months after their vacation, Sandy, Jim, and Max connected with the ophthalmologist to learn more about cross-linking to treat his progressing keratoconus. They found out that the procedure was intended to halt or slow the visual deterioration caused by the disease and were cautioned that if they chose to “watch and wait,” Max might eventually need a corneal transplant in the future.
That fall, Max was one of the first people in Ohio to undergo corneal cross-linking, as the FDA-approved procedure had only recently become available. Max’s left eye was treated first since it had progressed further than his right eye. Three months later (January 2017), Max’s right eye was treated. The results of the treatments and recovery period surpassed Max’s expectations, as he was able to return to school and his everyday life fairly quickly.
Living Life as a Normal Teenager with KC
Aside from his keratoconus diagnosis, Max is living life as a normal 16-year-old. He plays in a band and sings in an acapella group. Max says that the best thing about his decision to undergo cross-linking is his peace of mind. His disease has not progressed since he had the procedure and he hopes that the possibility of needing a corneal transplant is in the past.
For her part, Sandy is thankful to have met a keratoconus specialist on that fateful Uber ride which ultimately led to the cross-linking procedure. Before learning about the treatment, Sandy was constantly worried about Max and his future. Now, Sandy rarely thinks about the potential impact keratoconus could have had on Max’s vision and feels an enormous weight has been lifted off her shoulders.
Click to read more KC Journeys.
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.
At the age of 32, Kenny’s optometrist told him his vision was rapidly deteriorating, but his fear of eye drops, contacts, and medical procedures stopped him from visiting a specialist he was referred to who would ultimately diagnose him with a progressive eye condition.
Initial Suspicions
When Kenny was 12 years old, his optometrist presented him with the option of glasses or contacts to correct his nearsighted vision. Kenny chose the glasses. Even at a young age, the thought of having to touch his eye each morning to put contacts in was not something he was comfortable with.
Now 32 years old, Kenny has happily been wearing glasses for over 20 years. As someone who works on a computer all day, Kenny was used to looking away from his screen every once in a while to give his eyes a rest. However, about a year ago, he began taking more breaks at work to alleviate symptoms brought on by itchy dry eye. When he started having severe migraines and dizzy spells, he needed to take breaks even more frequently. In addition to his frequent breaks at work, Kenny found himself needing to pull over while driving at night due to the unbearable glare from the car lights.
Even 20 years after choosing to wear glasses, Kenny still was not comfortable putting eye drops in his eyes that he knew could help with his dry eye. Instead, he carried around a bottle of water and a cloth at all times that he would put on his eyes until they felt better.
Unexpected Results
With his declining eyesight beginning to significantly disrupt his daily life, Kenny visited his optometrist to find out what was going on with his vision. After a comprehensive eye exam, Kenny’s doctor shared shocking news: his eyesight had significantly deteriorated, nearly quadrupling his lens prescription.
While Kenny knew his vision was worsening, he didn’t expect this news. His optometrist immediately referred him to a local corneal specialist, Dr. John Frangie in Springfield, MA, for further evaluation.
After some consideration, Kenny decided he did not want to learn more about his declining vision and chose not to schedule a second appointment. Letting his fear of doctors and procedures lead his decision-making process, Kenny was willing to ‘turn a blind eye’ to his vision issues.
365 Days Later – A Diagnosis
After his shocking exam results, Kenny continued to push through his daily migraines and driving complications for a full year. In September 2019, he went back to the optometrist for his annual eye exam and learned his eyesight was even worse and would presumably continue to deteriorate. The optometrist informed him that if he did not visit Dr. Frangie for a consult soon, he would most likely need a corneal transplant in the near future. The fear of a corneal transplant procedure and hearing that his eyesight had worsened further, was enough for Kenny to realize that it was time to meet with the specialist.
At the appointment, Dr. Frangie ran further tests and diagnosed Kenny with progressive keratoconus in his right eye, while also seeing early signs of progression in the left. He immediately told him about corneal cross-linking, the only FDA-approved therapeutic treatment to slow or halt the progression of keratoconus and preserve his vision. Due to Kenny’s fears about putting anything in his eyes, he was extremely wary to have the procedure. However, Dr. Frangie discussed the risks and benefits of the procedure, reassuring him the procedure could slow or halt the progression of keratoconus.
From Fearful to Fearless
In October 2019, a month after his diagnosis, Kenny received FDA-approved cross-linking on his right eye. Kenny was relieved to learn the procedure was minimally invasive and did not involve needles or cutting, which made the experience ‘100 times better’ from the very start.
Dr. Frangie talked to Kenny through the whole appointment, relaxing him and preparing him for the procedure, which only lasted about an hour. When he was done, Kenny met his wife in the lobby to receive his prescription eye drops before heading home. After taking only one dose of pain medication, he felt no discomfort for the rest of his recovery, and three days later, he felt ready to return to work.
Moving Forward Fearlessly
Now, despite his past fears, Kenny couldn’t be happier that he received the cross-linking procedure. Following the procedure, Kenny used a daily contact lens to protect his right eye, which he admits was comfortable and only bothered him slightly because he knew it was there. Kenny has since switched back to his glasses and wears them daily.
Kenny now needs less breaks at work and is able to drive at night without issue. While he has more follow-up appointments in his future while Dr. Frangie continues to monitor his left eye, Kenny is ready to move forward fearlessly with regards to his vision.
Find a Cross-Linking Doctor Near You
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.
A Glaring Interruption
Growing up, Shanice was a talented athlete who dreamed of competing at the highest level of sports. In high school she was a standout player, eventually winning a scholarship to play division one college basketball for four years. After a strong college career, she was offered a chance to play professionally in Switzerland, and took this opportunity to realize her dreams– the last thing on her mind was potential vision issues.
In 2011, Shanice returned from overseas and enlisted in the Army reserves, feeling that the Army would be a natural continuation of her desire to be active in her career and experience the world. However, during the application process Shanice was surprised to learn that she was living with keratoconus, a degenerative eye disease that causes progressive thinning and bulging of the cornea.
Due to the long-term implications of the disease, Shanice’s application was rejected by the military. While she had noticed that it was becoming increasingly difficult to focus her left eye and that the glare from bright lights was very severe at night, she had never imagined she was living with a condition that would change the life she had envisioned for so many years.
Shanice worried about how keratoconus would affect her quality-of-life and she became increasingly concerned that she may lose her vision. “[Playing sports and being active] is something that gives me joy and I didn’t want that to stop, especially not right now when I’m still young,” said Shanice.
The Game Plan
Together, Shanice and her mother began researching keratoconus and how to best manage her condition. In high school, her mom attended all of her sports games and now was accompanying his daughter to her local eye doctor appointments. They learned about all of the possible treatment options– including corneal transplants and FDA approved corneal cross-linking.
In the meantime, Shanice did the best she could to maintain her vision. The symptoms in her left eye were far worse than her right, so she started wearing hard contact lenses. They were initially uncomfortable to wear and it was difficult to find an acceptable fit. To test the fit of the contact lenses in her left eye, Shanice tried one lens at a time, wearing it for at least a week. If the lens did not work for her, she would try a new lens and repeat the process until her doctor found the correct fit.
Determined to stay active, Shanice started playing women’s professional tackle football, and it soon became clear that a corneal transplant was not a practical option for her lifestyle. Even a minor trauma to the eye might cause the corneal graft scar to rupture, so it was evident that she needed a better solution.
Reconsidering her different treatment options, Shanice, with the support of her mother and former high school mentor, decided that cross-linking was the right decision for her long-term health. In March of 2017, she underwent cross-linking in her left eye.
Getting Back on the Field
Shanice’s success with cross-linking has also broadened her contact lens options. As of February 2018, she is able to wear hybrid lenses for eight hours or more a day, enabling her to enjoy an active lifestyle once again. She hopes to have her right eye treated with cross-linking in the near future.
During the initial period of recovery, she relied on her mother and mentor for support and used eye drops to alleviate any lingering symptoms. The first few days of Shanice’s recovery after the procedure were challenging, but soon the feeling of discomfort lessened and she was able to resume her normal activities. Within a couple of weeks, Shanice was back on the field and playing football.
Click here to read more KC Journeys.
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.
Ever since he was a young boy, John, now 26 years old, has always loved making people smile. As he got older, it brought him such joy to make others happy that he decided to make a career out of it. John, who has progressive keratoconus and Down syndrome, teamed up with his father, Mark, to establish their own business. Together they launched John’s Crazy Socks, a social enterprise inspired by John’s love of colorful and fun socks with a mission to make people happy, while also raising money for important causes. Although John was optimistic about his future, he was worried that his keratoconus would potentially impact the career he is so passionate about. Keep reading to learn more about John’s inspiring journey to treating his keratoconus and running a successful and charitable business, all while making a difference in people’s lives.
Creating His Own Path
John’s focus has always been to make others happy, but when he began experiencing significant vision issues in junior high school, he had to focus on his own life. He was having trouble seeing the boards at school, and his parents noticed that John was squinting frequently. After being seen by an eye doctor, John was simply fitted with glasses and sent on his way. Unfortunately, his eye problems persisted and John noticed that his prescription was no longer working. After scheduling another eye exam, John was diagnosed with progressive keratoconus.
Even though he had never heard of keratoconus, John and Mark learned that it is not uncommon for people who are living with Down syndrome to experience eye issues. In fact, research shows that 5 to 15% of people with Down syndrome are affected by keratoconus, even though it is considered a rare disease. Although it was comforting to know what was going on, the duo was disappointed to learn that there were not many treatment options available to them at the time.
Despite being in the middle of navigating his keratoconus journey, John was also concentrated on his future and career. In September 2016, John entered his last year of school, but he struggled to find work that he could pursue after leaving school. Instead of letting it get him down, he decided to go into business with his father. By December of that year, John and Mark opened John’s Crazy Socks, a specialty sock company that raises money for important causes such as Down syndrome, breast cancer, animal rescue, and more. In addition, 5% of all sales are donated to the Special Olympics. John’s Crazy Socks also serves as an outlet for John to express his creativity. When the company first launched, they offered 37 different sock styles and patterns. Today, as the world’s largest sock store, John’s Crazy Socks carries more than 4,000 varieties of socks and has been featured on national news stations, including ABC, BBC, CBS, PBS, and more.
Getting Proper Treatment
While the business was booming, John’s keratoconus continued to progress. In search of a keratoconus expert to advise them on appropriate treatment options, John and Mark met Dr. Ann Ostrovsky. Dr. Ostrovsky is an Assistant Clinical Professor of Ophthalmology at New York University Medical Center and Director of the Keratoconus Program at NYU Langone Eye Center, where she specializes in collaboration with the NYU Down Syndrome Program and pediatric ophthalmologists. Upon examining John’s keratoconus, Dr. Ostrovksy recommended he receive iLink® FDA-approved cross-linking to slow or halt the progression of the condition in his right eye. Unfortunately, the progression of keratoconus in John’s left eye was too advanced for cross-linking. For the time being, Dr. Ostrovksy continues to monitor John’s left eye and he is using a contact lens to help his vision.
Before the surgery, Dr. Ostrovsky walked John and Mark through every step of the cross-linking procedure so that John would know exactly what to expect. Then, on the day of the procedure, Dr. Ostrovsky played John’s favorite music to make him even more comfortable. John underwent iLink FDA-approved cross-linking in his right eye on August 3, 2021. He experienced minor pain afterward but felt it was manageable overall. Following the procedure, John was fitted for a scleral lens to help correct his vision. It was then that Mark began to notice improvements[1] in John’s vision, such as less squinting, and John seemed more comfortable.
There’s Nothing Holding Him Back
Since receiving iLink FDA-approved cross-linking and being fitted with a scleral lens, John is now free to focus on his career and future without having to worry about his keratoconus progressing. He has goals to grow his business this year, travel, speak at in-person events, and maybe even attend the Special Olympics. He’s also thinking about designing a special sock to help spread awareness for keratoconus. No matter what the year brings, John’s happy he received iLink and knows that he can handle anything that comes his way next.
[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.
Find a Cornea Cross-Linking Specialist Near You:
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.
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:
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.
As a young high school student, life can bring many challenges – whether it be schoolwork, sports, or friendships. While most teens are navigating through their adolescence and growing pains, others – like Louis – are discovering they are also living with a progressive eye condition.
Unexpected Challenges
When Louis was 15 years old and a freshman in high school, he visited the school nurse for a vision screening test that was required for students. To Louis’s surprise, he failed the exam and was referred to Optometrist Dr. Emily Shull at SIGHT Eyewear and Eyecare by his school nurse for further testing. During his visit with Dr. Shull, Louis assumed he would be prescribed glasses or contacts. Instead, Louis was told he was living with keratoconus, a progressive eye condition.
Abby, Louis’s mom, was not expecting that her son’s first eye exam would lead to him being diagnosed with a progressive eye condition. Dr. Shull explained that there were various treatment options, including cross-linking, contact lenses, or a corneal transplant. By the end of the appointment, Abby and Louis were leaving with a referral to ophthalmologist Dr. Adam Kaufman at the Cincinnati Eye Institute, to learn more about the condition and available treatment options.
A Shocking Realization
Louis has always considered himself an active teen. He played baseball, ran cross country, was a lifeguard, and enjoys archery and shooting guns. Unfortunately, he stopped playing baseball because it was difficult for him to see the ball and lifeguarding became a struggle as he sometimes could not see how deep the swimmers were. With the recommendation to visit Dr. Kaufman, Louis was hopeful that he would finally get some answers about his vision, learn more about his diagnosis, and hopefully return to some of the activities that he loved.
During the appointment with Dr. Kaufman, Louis was shocked to learn that he was almost blind in his right eye. When discussing some of the previous vision issues he experienced, Dr. Kaufman discovered Louis had been overcompensating in his left eye, not realizing how poor his vision had become in his right. Dr. Kaufman recommended the iLink® FDA-approved cross-linking procedure for Louis’s progressive keratoconus, which is meant to slow or halt the progression of the disease. Following the procedure, Louis would then be able to be fitted with contact lenses with the goal of improving his vision[1][2]. Abby was a little hesitant at first because she had never heard of keratoconus and wondered what the best option would be for her 15-year-old son. She asked questions during the appointment and began doing her own research at home to make sure her son would get the treatment that was right for him.
After learning more about the iLink® procedure and that it was a minimally invasive procedure, and intending to keep his condition from worsening, Louis and Abby decided this treatment was right for him. Louis was diagnosed with progressive keratoconus in March 2021, and they quickly scheduled an appointment for September, he was scheduled to have his right eye treated with iLink® at the Cleveland Eye Institute. Louis was a little nervous about being awake during the procedure but knew that cross-linking was the right decision for his long-term eye health.
Navigating After Treatment
Following Louis’s iLink® procedure in his right eye, he began using drops to help with inflammation. Louis has yet to be prescribed lenses but he plans to get a gas permeable contact for his right eye, once he has reached 3 months post-procedure. During the initial follow-up appointment, Dr. Kaufman predicted that Louis’s vision will likely improve after he receives his contact[1][2]. He is also monitoring Louis’s left eye to determine if it progresses. All three are pleased to see the results of Louis’s procedure, bringing some much-needed relief to Abby and Louis. Now, Louis is looking forward to the future and potentially trying baseball out again!
As for his mom, Abby, she is extremely grateful that her son was diagnosed and treated early. She is especially thankful for the school nurse that identified Louis’s vision issues and was proactive in referring him to Dr. Shull and the eventual recommendation to Dr. Kaufman. Abby was also shocked to learn that to help ease any worries, the Cleveland Eye Institute would allow her to watch the procedure happen in a room nearby – which comforted her knowing that Louis was in safe hands. She is now confident that iLink® was the right choice for her son and recommends that parents seriously consider iLink® FDA-approved cross-linking if their child is diagnosed with progressive keratoconus and eligible for the procedure.
[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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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.
After conducting all of your research and confirming your doctor performs iLink® FDA-approved cross-linking to slow or halt the progression of your progressive keratoconus – now what? First, you should be proud that you are taking steps towards prioritizing your eye health. This is no easy feat, and you deserve to be recognized for it!
By now, you’ve probably learned all about the procedure from your doctor and studied up on what you can expect from the cross-linking procedure. However, you may have some additional questions on what your recovery might be like, such as: What can I expect following the procedure? When can I return to my normal activities? What supplies will I need at home to make myself comfortable? What will I do during my recovery to pass the time? Don’t worry, we’re answering all of these questions and more, so you can feel fully prepared heading into your procedure.
It’s important to know that recovery is different for everyone. We’re providing you with a full iLink® Recovery Guide below, which includes information on how to prepare for your procedure, when you can expect to return to your normal routine, and suggested essentials. Continue reading to learn more!
What to Expect After Cross-Linking
Immediately after treatment, a bandage contact lens is placed on the surface of your eye to protect the newly treated area. After the numbing drops wear off, you may feel some discomfort, often described as a gritty, burning sensation. This discomfort can often be managed with Tylenol and artificial tears. If your pain is severe, make sure to contact your doctor, as oral narcotic medications may be used.
Ultimately, the goal of the iLink® procedure is to stiffen the cornea to slow or halt further progression of keratoconus to preserve your vision. While cross-linking is not intended to eliminate or reduce dependence on refractive correction, reduced progression may allow you to be better fitted for contact lenses, which in turn can improve vision.
In order to help you feel better prepared before your procedure, we’re providing some guidelines to follow after receiving iLink®:
- While those with keratoconus should always avoid eye rubbing, it’s especially important not to rub your eyes for the first five days after the procedure.
- You may notice a sensitivity to light, which can be helped by wearing sunglasses. You may also experience a foreign body sensation, causing discomfort in the treated eye.
- If you experience severe pain in the eye or any sudden decrease in vision, contact your physician immediately.
- If your bandage contact lens from the day of treatment falls out or becomes dislodged, do not replace it and contact your physician immediately.
- While uncommon, ulcerative keratitis, a potentially serious eye infection, can occur after treatment. Your doctor should monitor defects in the outermost corneal layer of the eye for resolution. The most common ocular side effect to occur is haze. For the full list of potential side effects, see Prescribing Info.
As with any medical procedure, it is necessary to give yourself adequate time to rest and recover before jumping back into your daily activities. For example, you likely won’t want to rush to return to work or school if you’re still experiencing any discomfort. Cross-linking recovery will be different for everyone, so you should talk to your doctor about what recovery might look like for you, and how long you should expect to forgo certain activities. If you wear contact lenses, you should also ask your doctor when it’s okay to resume wearing them. Typically, patients are allowed back into contact lenses by about one month after treatment, but this timeline varies from person to person. Remember, if you notice anything out-of-the-ordinary with your recovery, make sure to call your doctor immediately.
Stock Up On Recovery Essentials
In the days leading up to your iLink® procedure, you may find it helpful to stock up on some essentials for your recovery, such as medications and basic groceries. This way, you won’t be scrambling at the last minute, and you’ll feel more prepared going into the procedure. If possible, make sure you have the following items on-hand in order to make your recovery an easier, more manageable experience:
Pain Relievers
It’s a smart idea to have some over-the-counter pain relievers at your disposal in case you need them. After the numbing drops from the procedure wear off, you may experience some discomfort or a gritty, burning sensation. If you do experience this, be sure to check with your doctor regarding which over-the-counter medications are okay to take with any prescription medications your doctor may provide.
Artificial Tears
Another option to help manage potential discomfort after the procedure is by using preservative-free artificial tears, which are used to lubricate dry eyes and help keep the outer surface of your eyes moist. Artificial tears can be especially helpful in treating dry eyes after a surgical procedure, such as cross-linking.
Comfortable Attire
The last thing you’ll want to do is arrive home from your cross-linking procedure to realize you have nothing clean to wear while you recover. Instead, pick out a few comfortable outfits beforehand, including your favorite sweatpants and tee shirt or other loungewear, and make sure they’re clean and easily accessible.
Snacks and Drinks
It’s important to nourish your body during your recovery, so you’ll likely want to purchase a few essential grocery items before your procedure so you don’t have to stress over it later. Think about grabbing a few pre-packaged snacks, frozen meals, and sports drinks, so that you don’t need to put too much energy into meal preparation. It’ll make your recovery that much easier knowing your favorite snacks and drinks are ready to grab and go!
Ice Packs
Resting ice packs on your eyes can be a great way to manage any discomfort you may be feeling during your recovery. While you’re at the store stocking up on snacks and drinks, grab a few ice packs to keep in the freezer. That way, if you need them while you recover, they will be easily accessible and already frozen.
Blackout Curtains
You may experience light sensitivity following your iLink® procedure. To help ease this symptom, spend your recovery in a room that has blackout curtains, or curtains that best block out any exterior light. If you do not have blackout or dark curtains at home, try draping a blanket over some windows to minimize any glare or exposure to sunlight.
How to Occupy Your Time During Recovery
It can be hard to slow down and take a step back from your hectic daily schedule, but it’s necessary to do so while you heal from cross-linking. You may need to take a few days off from your regular activities, such as work or school, and you can discuss with your doctor what your specific recovery timeline will look like. Although it’s important to let your body rest and recover during this time, that doesn’t mean you can’t find some enjoyable activities to pass the time until you’re fully healed. Some suggestions on how to spend your time during recovery include:
Listen to A Podcast
Recovery doesn’t need to be boring. Instead, kick up your feet and distract yourself with an interesting podcast to pass the time. Podcasts are a great way to relax your eyes while stimulating your mind. In the mood for something funny, serious, scary, or historical? Good news – there are countless options to choose from. Check out some of the top podcasts of 2021 here. Before you know it, you’ll be well on your way to recovery.
Jam Out to Some Tunes
What better time to listen to your favorite musician’s entire album collection from beginning to end than now? Not only is listening to music a relaxing and enjoyable experience, but studies have shown that it can also improve blood flow, lower levels of stress-related hormones, and even ease pain. Alexa, turn on “my recovery playlist!”
Listen to an Audio Book
Resting your eyes during cross-linking recovery? No problem! A couple of days on the couch will be much more enjoyable with the right audiobook to transport your mind elsewhere. Before your procedure, peruse the New York Times Bestseller List and pick out something that piques your interest.
Get Some Rest
It may seem simple, but how often do you get to rest at your leisure? Use your recovery to take a break from your normal, hectic life and get some much-needed and well-deserved shut-eye. Whether you choose to sleep in, take an afternoon nap, or hit the hay earlier in the evening, your body will thank you for it. Not only will getting some extra sleep feel good, but it will also help you to recover.
Your Recovery Awaits
Although it’s normal to be nervous about the aftermath of an upcoming medical procedure, your recovery from cross-linking doesn’t have to be stressful or dreaded. With some planned activities to pass the time and a few essential supplies, you can feel much more prepared.
If you have any specific questions about your corneal cross-linking recovery or notice any unusual symptoms following your procedure, make sure to contact your doctor. If you’re looking to hear from others who have undergone cross-linking, check out their KC Journeys. You can also visit our website to learn more about the procedure or to find a keratoconus specialist near you.
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