For many people living with keratoconus, contact lenses or glasses are often prescribed as the first treatment option. While these treatments help to manage some of the symptoms of keratoconus, they do not stop the progression of the condition. Conversely, FDA-approved corneal cross-linking and corneal transplants are treatment options designed to address the underlying condition. Corneal cross-linking is often recommended as the first option to treat progressive keratoconus, as it is minimally invasive and can slow or halt the progression of the condition. If treated early with corneal cross-linking, patients are typically able to preserve their vision and get fitted with proper lenses to help improve overall vision.
However, even though your doctor has recommended a specific treatment, you may still have questions or doubts. Some questions you may have include: What are the benefits of corneal cross-linking over corneal transplant? Should I consider waiting until my child gets a little bit older for them to have this procedure? Can I – or my child – physically handle the procedure? What is the recovery like? What are the risks or side effects of the cross-linking procedure?
Below are some personal keratoconus journeys of those who have been diagnosed with keratoconus and ultimately decided to receive corneal cross-linking. Keep reading to learn about their stories and what they had to say since undergoing the cross-linking procedure.
Why We Decided on FDA-Approved Cross-Linking
Sarah – When Sarah was born in 2000, her mother Sylvia began reading a book intended to help parents of children with Down syndrome understand and navigate some of the unique challenges they might face. However, when Sarah was diagnosed with keratoconus in 2018, they had to look elsewhere for answers when the only treatment option discussed in the book was a corneal transplant. This keratoconus diagnosis was surprising news for Sylvia as Sarah had not mentioned experiencing trouble with her vision, despite her strong communication skills.
Sarah’s ophthalmologist referred them to a corneal specialist who informed the family of another treatment option: FDA-approved corneal cross-linking. After discussing the benefits and risks with their doctor, Sylvia knew it was important to slow or stop the progression of the disease and that this was the best treatment option for Sarah. Since then, Sarah has been fitted with contact lenses and is able to see more clearly. Read more about Sarah’s Keratoconus Journey here.
Baylen – In 5th grade, Baylen started wearing a contact lens in his left eye to correct his nearsightedness. While the contact seemed to manage his vision issues, he soon began experiencing chronic headaches that impacted his ability to function in and out of school. However, when Baylen’s dad took him to his annual eye exam at Walmart, the doctor noticed something irregular about his cornea and immediately referred him to a cornea expert, who diagnosed him with keratoconus.
Baylen’s parents felt relieved to finally know exactly what was going on with their son’s vision and headaches, and decided to treat his progressive keratoconus using FDA-approved corneal cross-linking, which they were happy to learn was covered by insurance. Now that his keratoconus has been treated with FDA-approved cross-linking, Baylen is back to his active self and participating in the activities he enjoys, including basketball and track. To learn more about Baylen’s experiences, read his Keratoconus Journey here.
Aaron – After graduating high school, Aaron suffered an unexpected and painful corneal rupture in his right eye. During his treatment, doctors determined the root cause of his vision problems: keratoconus. At age 18, Aaron received a corneal transplant to replace the damaged tissue in his right eye. However, because his left eye was less severe, he began researching other ways to manage his condition and decided on specialty lenses. As time went on, the vision in his left eye started to decline, and with a career as a semi-trailer truck driver, Aaron feared he might lose his job and his livelihood if he could not find a way to preserve his vision.
Aaron learned about FDA-approved corneal cross-linking from a local ophthalmologist. After reading reviews and doing his own research, Aaron decided that cross-linking was the best option for him, both in the short and long term. Now, Aaron is back behind the wheel of his semi-trailer truck wearing soft contact lenses and confident in his ability to see the road clearly. Read Aaron’s full Keratoconus Journey here.
Brandon – After a lifetime of near-perfect vision, Brandon Williams, defensive tackle for the Baltimore Ravens, found himself with an unexpected vision diagnosis. Brandon sat in his usual spot in the Ravens’ meeting room, but his ability to see the dry-erase board became worse and worse. Realizing his vision issues could affect his performance on the field, he knew he needed to visit a doctor as soon as possible. Brandon turned to FDA approved corneal cross-linking to treat his progressive keratoconus and help preserve his vision. Now, he is able to step on the field knowing that his vision isn’t holding him back from succeeding in his NFL career. Read more about Brandon’s Keratoconus Journey here.
“I was scared, but also relieved that there was a treatment out there that could help me.”
Bekah – Bekah went to her local DMV to renew her expiring driver’s license, never expecting that she would fail the test due to her vision. At an ophthalmologist appointment, Bekah faced more unexpected news when she was told she had keratoconus. A year after being fitted for rigid gas permeable (RGP) contact lenses, the lenses stopped working and Bekah focused on learning everything she could about progressive keratoconus and FDA-approved cross-linking, knowing she needed to slow or halt the progression of her condition. Bekah researched and visited countless ophthalmologists around her state who were performing the FDA-approved procedure, before finding a doctor that was right for her and that accepted her insurance. To learn more about Bekah’s experience read her Keratoconus Journey today.
“I am a vivacious and tenacious person, and I did not want the fear of losing my vision to have a hold over me any longer.”
Nic – As an airplane mechanic, Nic depends on his eyesight to inspect and repair airplanes. However, when his vision began to fail, he knew he needed to find a “fix” before it started impacting his work. Once Nic realized his vision challenges were not temporary, he visited his optometrist, who informed him he had progressive keratoconus in both eyes.
After meeting with an ophthalmologist, Nic learned more about his diagnosis and was relieved to discover there were treatment options available, including Intacs. However, the doctor would not perform the surgery unless his keratoconus stabilized. At this point, Nic learned about corneal cross-linking. However, cross-linking was still experimental and not yet approved by the FDA. Knowing this was the treatment path he wanted to take, he waited for the procedure to receive FDA-approval in 2016 to schedule his appointments. After cross-linking, Nic was able to resume his normal activities and proceeded with the Intacs surgery. Read Nic’s full Keratoconus Journey today.
“It’s tough knowing keratoconus is not preventable or fixable, but you can change the course a little.”
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The stories above are just a few examples of individuals who were diagnosed with keratoconus and determined that FDA-approved corneal cross-linking was the right treatment path for them. Diagnosing and treating keratoconus as early as possible can help preserve your vision and overall quality of life. If you or a loved one have been diagnosed with keratoconus, connect with a physician in your area who is performing FDA-approved cross-linking and accepts your insurance.
If you are planning to receive FDA-approved cross-linking between now and December 31, 2020, the Living with Keratoconus Patient Support Program is giving eligible candidates up to $100 towards their non-reimbursable copay expenses. Visit our website today to see if you are eligible and to enroll in the program.
There are risks and side-effects involved with corneal cross-linking including, ulcerative keratitis, a potentially serious eye infection. The most common side effect is ocular haze among others. Learn more about important safety information at the bottom of this page. Be sure to discuss the risks and benefits of cross-linking with your doctor.
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.