How knowledgeable are you on the topic of keratoconus? If someone asked you to define or explain keratoconus, what would you say? Keep reading for some facts that may help you explain keratoconus to family members and friends who have never heard of the condition.

Technically speaking, keratoconus is a non-inflammatory eye condition in which the normally round dome-shaped cornea progressively thins causing a cone-like bulge to develop. If untreated, this can result in significant visual impairment1. But how do you explain what that means to someone who has never heard of keratoconus? Here at Living with KC, we want to provide you with as much information as possible on keratoconus to help you better understand the condition.

Fact #1 – An increase in available diagnostic tools has resulted in greater awareness for keratoconus.  

Due to similar symptoms like excessive prescription changes and blurry vision, keratoconus can often be misdiagnosed as a regular astigmatism. However, available diagnostic tools, such as corneal topography (link to topography blog), corneal tomography, a slit lamp microscope, and/or an ultrasound pachymeter, are allowing patients to receive an early and accurate diagnosis. Most recently, Zeiss received 510(k) clearance from the FDA to expand its Anterior Segment Premier Module to include Epithelial Thickness Mapping (ETM), while Optovue received FDA approval in 2018 for its epithelial thickness mapping (ETM) technology.

Awareness of keratoconus is growing with the availability of new treatment options, diagnostic tools, and high-profile athletes like Steph Curry and Brandon Williams using their platform to cope with their diagnosis and help others.

Fact #2 – Symptoms usually first appear in the late teens and early twenties2.

The earliest signs of keratoconus may include blurred vision, frequent changes in lens prescriptions, or vision that cannot be corrected with glasses3. In addition, common symptoms of keratoconus include excessive eye rubbing, difficulty seeing at night and frequent headaches4. When it comes to the average age of onset of keratoconus, patients are typically around the age of 16, but diagnosis as young as six years has been recorded5. If the condition is left untreated, patients with keratoconus may progress for 10-20 years, and then slow or stabilize6. However, for many patients their condition can progress to a point where they may need interventions to preserve their vision. That being said, the condition rarely develops after the age of 407.

An early and accurate diagnosis of the condition allows people to get on the right treatment path faster.

When assessing treatment options, it’s important to talk to your doctor about which of the three forms of keratoconus you are living with: puberty-onset, late-onset, and forme fruste (mild). Differentiating between these forms of keratoconus can be helpful in your understanding of what to expect regarding the eventual progression of the disease8 and what treatment options could be best for their situation.

Fact #3 – At this time, there is no cure for keratoconus9.

While there is currently no way to reverse the effects of keratoconus or cure the condition altogether, available treatment options focus on improving vision and/or halting the progression of the disease and protecting one’s vision. Eyeglasses or soft contact lenses, rigid contact lenses, scleral contact lenses, and intracorneal ring segment implants can be used to treat symptoms of the disease, while cross-linking or corneal transplant surgery can be used to treat the condition10.

With the only FDA-approval of Avedro’s Photrexa Viscous (riboflavin 5’-phosphate in 20% dextran ophthalmic solution) and Photrexa (riboflavin 5’-phosphate ophthalmic solution) for epithelium-off cross-linking in April 2016, there is now an effective, proven way to slow or halt the progression of keratoconus. More and more insurance plans are realizing the effectiveness and necessity of this treatment and most insurance carriers now cover this FDA-approved epi-off cross-linking procedure, which is up from three insurance carriers at the beginning of 2017.

Fact #4 – Studies show that patients could be expected to pay more than $25,000 for cost of care over their lifetime post-diagnosis11

One recent survey found that 46% of patients pay more than $1,000 annually for treatment costs12. A large portion of the lifetime cost of keratoconus care is for the specialty contact lenses that are required to correct the distorted vision caused by the condition and are not typically covered by insurance13. If keratoconus is diagnosed early and treated with FDA-approved cross-linking, patients may be better fitted with soft contact lenses or glasses and could avoid the cost and complexity of managing corneal or scleral gas permeable lenses14. If a person’s keratoconus has progressed too far, and specialty lenses and cross-linking is not a viable option, patients often need to turn to a cornea transplant. However, corneal transplants can cost $13,000 to $27,000 and have demonstrated a high failure rate, with some reporting 73% failure in 20 years15.

Fact #5 – Some experts believe that keratoconus is bilateral – it will always affect both eyes16.

Not every keratoconus patient is the same. Some are diagnosed with keratoconus in one eye, and others have the condition affecting both of their eyes. Because of variability, the condition may be so mild in one eye that it is virtually undetectable. It may stay that way or the better eye may progress over time.

Fact #6 – While the exact cause of keratoconus is unknown, it is believed that genetics, the environment and the endocrine system all play a role17.

Environmental causes of keratoconus may include eye rubbing, allergies, and oxidative stress, while hormonal causes may be a result of puberty and pregnancy. In some cases, there is a hereditary component and studies indicate that about 10% of patients have affected relatives18.

Fact #7 – Keratoconus affects both genders, although it is unclear whether significant differences exist between males and females19.

The disease is also present in all ethnic groups, with some studies showing higher incidence rates among Asian populations, in particular20.

If you’re looking for even more information on keratoconus, available treatment options, or to read some personal stories about living with keratoconus, follow Living with KC on Facebook, Twitter, and Instagram












12NKCF presentation. Slide 16. Mayo Clinic Survey. Publication pending..


14Optometry Times – July. Management of Keratoconus Patients. Scott Hauswirth, OD, FAAO, and Brooke Messer, OD, FAAO, FSLS