10 Things Keratoconus Patients Should Know

10 Things Keratoconus Patients Should Know

by Brian Chou, OD, FAAO, FSLS

  • December 5, 2021

Now is the best time in history to have keratoconus! With appropriate eye care, most keratoconus patients can enjoy a productive and even remarkable life like these celebrities and notable people. This is due to technological advances in diagnosing and treating the disease. Of course, you can expect to need more eye doctor visits than the average person over your lifetime. There may be also times you feel frustrated. However, the future for most with keratoconus is bright.

In the past decade, there have been more breakthroughs for keratoconus than in the previous hundred years, highlighted by improved screening, corneal cross-linking (CXL) surgery, and new innovative contact lens designs. Consultations for LASIK candidacy have identified many cases of previously undetected keratoconus. Prudent LASIK surgeons know not to operate on these eyes, so they are careful to identify even subtle keratoconus. The larger known population of keratoconus patients is incentivizing the development of improved treatments. CXL can defensively halt the progression of the disease, while advanced contact lenses, including hybrid and scleral contact lenses, can offensively restore vision beyond what any surgery can offer.

Below are 10 concepts every keratoconus patient should understand.

1. Keratoconus Affects Both Eyes

Keratoconus affects both eyes, often one eye more than another. The asymmetry can sometimes be dramatic. LASIK is unsafe for those with keratoconus, even for a “good” eye, as it would further thin tissue which is already weak and susceptible to distortion.

2. Eyeglasses Are Useful for Mild Keratoconus

Although glasses are usually inadequate for restoring vision in keratoconus, they can still help in mild to moderate disease. If glasses help, they can serve as an adjunct to specialty contact lens wear, particularly in the morning and evening around the house. If updated glasses by themselves cannot provide you good enough vision, don’t count on soft contact lenses to help your vision. More likely than not, you will need rigid surface contact lenses like scleral contact lenses. The new technology rigid surface contact lenses, when prescribed appropriately, are more comfortable and convenient than ever.

3. Eye Rubbing May Exacerbate Keratoconus

Many with keratoconus rub their eyes due to itching, especially during the teenage and early twenties. Eye rubbing might exacerbate progression of the disease. Over-the-counter antihistamine eye drops like Pataday Once Daily Relief Extra Strength can help reduce itching and eye rubbing. A good time to use an antihistamine eye drop is after removing contact lenses when many patients particularly experience itchy eyes. In severe cases, your eye doctor can prescribe drops with even greater efficacy.

4. Keratoconus Stabilizes Itself by the 3rd to 4th Decade of Life

It is often difficult for your eye doctor to detect whether your keratoconus is progressing, especially over age 30. The disease classically progresses during the teenage years to early twenties before stabilizing on its own thereafter. This means that CXL may not have a compelling role over age 30 due to self-stabilization of the disease.

5. Keratoconus Surgery is Not Proven to Improve Subsequent Contact Lens Success

While CXL and Intacs surgery for keratoconus may reduce corneal distortion, there is no guarantee that these surgeries will make it easier for your doctor to subsequently prescribe contact lenses. Therefore, when it comes to vision rehabilitation, it is usually best to exhaust non-surgical treatments ahead of surgery.

6. Blood Relatives Should Get Checked for Keratoconus

Make sure your family knows you have keratoconus and that there is a known genetic link. About 1 in 10 can identify another blood relative with keratoconus. Adolescent relatives should be screened, so that if keratoconus exists, CXL can be performed to halt the condition in its earliest stage.

7. The Best Vision is Almost Always Requires Special Contacts, Not Surgery

The gold standard for vision restoration remains rigid surface contact lenses. Every patient undergoing corneal surgery – whether corneal cross-linking, Intacs, conductive keratoplasty, corneal transplantation, or implanted intraocular lenses – can still reasonably expect further vision improvement with rigid surface contact lenses after surgery. There is no currently available surgery that can restore a light-bending surface as smooth as a rigid surface contact lens. In other words, while surgery can help improve vision to some degree, special contact lenses are almost always still needed for the best functional vision.

8. Your Keratoconus Doctor Matters Enormously

It is not the brand or proprietary contact lenses which dictates a desirable outcome. No single lens type or modality works for all cases of keratoconus. The pattern of corneal distortion is as unique from one eye to another. What matters most is your eye doctor’s judgement, experience, and expertise. Find the right doctor, and he or she will prescribe and recommend the appropriate products and treatments for you.

Most eye doctors only see a few cases of keratoconus each year. Don’t feel surprised or feel slighted if your eye doctor refers you to one of their colleagues with greater expertise. Many with keratoconus end up seeing a keratoconus practitioner within in a teaching institution or keratoconus referral center for this reason.

9. Coverage for Medically Necessary Contact Lenses is Spotty

Don’t despair if you lack a vision plan with coverage for non-elective or medically necessary contact lenses. Nor will most medical insurance provide adequate coverage for non-elective contact lens wear. You are not alone. You may have to go outside your provider network to get the eye care that you need. Rather than allowing medical insurance or a vision plan dictate what you can do, consider taking control of your eye care yourself. Paying for the care that you need on your own is an investment in your wellbeing. You can set up a flexible spending (FSA) or health savings account (HSA) for these out-of-pocket expenses. Your visual rehabilitation can provide you with enduring and much greater returns in quality of life in the classroom, workplace, avocations, and social settings.

10. Support the National Keratoconus Foundation

To help others with keratoconus, please share your experience! The National Keratoconus Foundation is an excellent resource for patients and the friends and family of those with keratoconus. If you have been fortunate in your treatment and circumstances and would like to give back, please consider volunteering or donating to NKCF.


ReVision Optometry in San Diego is a referral-based practice serving patients with keratoconus and other complex eye conditions requiring medically necessary contact lenses to restore vision. Request an appointment online or call 619.299.6064.