When a loved one is diagnosed with keratoconus, there are often questions and challenges that individuals and families must face. After learning about the diagnosis, you may feel confused, worried, or scared. However, having the right information and knowledge about this progressive eye condition will help you feel more confident about how to manage your keratoconus. As with any condition, it’s important to understand the appropriate steps to take following a diagnosis.
As you research and gather information about keratoconus, you will learn that, if left untreated, keratoconus can result in significant vision loss and may lead to a corneal transplant in severe cases. However, with iLink® FDA-approved cross-linking, you can slow or halt the progression of the condition to preserve vision.
Hear From Brock Hansen, MD, Ken Beckman, MD, Dr. Kunal Merchant, MD, Lisa Sitterson, MD, Jerry Hu, MD, Craig Berger, MD, and Jack Parker, MD!
We recently connected with some doctors who specialize in treating keratoconus to gain more insight about living with this progressive condition. In this blog, the physicians will discuss various topics, including the signs and symptoms to look for, the importance of an early diagnosis, what can increase the progression of keratoconus, the benefits of the iLink® procedure, and much more!
What is keratoconus? What are the benefits of diagnosing and treating keratoconus early?
Dr. Brock Hansen (Utah Eye Centers): Keratoconus is a genetic eye disease made worse by eye rubbing. It leads to a literal “coning” of the eye with decreased vision. Severe disease can lead to blindness that requires a cornea transplant. The disease progresses along a continuum starting with the need for glasses/contacts, to requiring a hard contact in order to see well, to requiring a cornea transplant to restore vision. Early diagnosis and treatment with iLink® cross-linking can stop disease progression in its tracks and thereby significantly improve quality of life.
What are some signs and symptoms parents can look for in children who may be experiencing vision issues?
What is the recovery typically like after iLink FDA-approved cross-linking? Do you have any recommendations or tips & tricks for how patients can prepare themselves for the recovery period?
Dr. Kunal Merchant (Eye Care Associates of New Jersey): “In my practice, I have found that patients have different experiences based on their personal healing pattern and pain tolerance. The procedure itself is not painful since numbing drops are placed on the eye prior to the start of corneal cross-linking. If a patient does experience discomfort following the procedure, it is typically most significant on the night of the procedure but improves dramatically overnight. Over-the-counter pain medications such as non-steroidals and acetaminophen can be helpful, particularly when combined with cold compresses and prescribed postoperative drops.
We place a bandage contact lens on every patient immediately after the procedure to help with quicker healing and less pain. The contact lens is removed 5 to 7 days later once the cornea has recovered from the procedure. After the initial 2-3 days, it would be extremely rare for a patient to experience significant pain.”
Is there anything that makes keratoconus worse?
Dr. Lisa Sitterson (Carolina Eye Associates): Below are some factors I believe can help keratoconus progress.
- Age: We worry about the progression or worsening of keratoconus in all patients with this condition; however, patients under the age of 40 are at higher risk. With age, the cornea stabilizes, and patients are less likely to get worse in their 50s or 60s.
- Eye rubbing: Eye rubbing is known to worsen keratoconus. Patients with keratoconus often rub their eyes out of habit or because their vision is blurry. I advise all my patients to refrain from rubbing their eyes. I even encourage them to allow their friends and family to tell them not to rub if they are unaware of their habit.
- Allergies/Eczema: Dermatologic conditions such as eczema or allergies lead to itchy eyes or irritated eyelid skin. This can cause eye rubbing and worsen keratoconus. Patients should try over-the-counter allergy eye drops and/or work with their dermatologist to control the itch.
- Poor contact lens fit: If contact lenses do not fit well or are too tight, they may cause irritation to the surface of the eye. This can worsen keratoconus over time and should be monitored carefully.
- Pregnancy or hormonal changes: The hormonal changes that occur during pregnancy can make the cornea less stiff and may also lead to worsening keratoconus. At this time, corneal cross-linking is not recommended during pregnancy, so speak with your doctor to determine when it would be safe to schedule the procedure.
- Not following up with your eye doctor: Your eye doctor will monitor certain corneal measurements to determine if your keratoconus is getting worse or if it is stable. Failing to come in for your scheduled visits could lead to worsening vision and missing out on timely treatment for keratoconus.
What is cross-linking? Is cross-linking covered by insurance?
Why should FDA approval matter from a patient perspective?
Dr. Craig Berger (Bay Area Eye Institute): Without FDA approval, doctors and patients alike would have no way to ensure that the medication or treatment their doctor recommends is safe and effective. Currently, only the epithelium-off version of collagen crosslinking is FDA approved because it demonstrated safety and efficacy in a prospective, randomized, multicenter, controlled clinical trial. Epithelium-on procedures are considered experimental and are not FDA approved and thus not covered by health insurance companies. Patients who choose cross-linking with iLink® from Glaukos can rest assured that they will receive a safe and effective treatment along with insurance coverage. As a board-certified cornea specialist, I have treated hundreds of patients with keratoconus without having their condition progress to the point of needing a corneal transplant. With FDA approval and proven efficacy corneal cross-linking with iLink is the best way to stop keratoconus in its tracks.
Will cross-linking improve vision?
Dr. Jack Parker (Parker Cornea): “iLink® is the only FDA-approved platform for corneal cross-linking in the country. This technology has been revolutionary for our practice, for our patients with progressive keratoconus, and for their families. Incredibly, keratoconus has been transformed, from a relentlessly progressive and potentially blinding disease to a condition that can be effectively slowed or halted, often with a single iLink® cross-linking treatment. This has been a truly revolutionary change in the management and prognosis of this progressive disease. After cross-linking, often with the assistance of other new technologies like scleral or implantable contact lenses, progressive keratoconic patients may often now enjoy excellent and in fact “normal” vision and get back to living their best lives.” 
Staying in the Know
Now that you have heard from a few keratoconus experts, we hope you learned a little bit more about keratoconus and the FDA-approved iLink® cross-linking procedure. Use this page as a reference if you find yourself searching for answers about all things keratoconus or need a way to help any family or friends learn more and feel more comfortable. More importantly, know that you are not alone and that the Living with KC community is always here for support. Be sure to discuss the risks and benefits of the procedure with your doctor.
If you would like to find an iLink® expert near you to learn more, search our physician locator to find a corneal specialist who is familiar with treating progressive keratoconus.
Dr. Jack Parker, MD, is paid consultant of Glaukos.
 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.