It’s not inevitable
Hearing the word “progressive” can make keratoconus sound like a slow slide you can only watch. That isn’t the whole picture. Keratoconus doesn’t progress in everyone, the risk changes with age, and when it does progress there’s a treatment designed to stop it. Some of what happens next is in your hands.
Who is most likely to get worse
The largest review of untreated keratoconus pooled data on 11,529 eyes. It found that, on average, the steepest part of the cornea steepened by 0.7 diopters over 12 months. But age made a big difference: for every 10 years older a person was, the predicted steepening over a year was 0.8 diopters less. People with steeper corneas at the start (above 55 diopters) also progressed more. The authors recommended closer follow-up, and a lower threshold for cross-linking, for people under 17 and those with steeper corneas.[1]
Young people are at highest risk. In a study of 148 eyes of people diagnosed at 18 or younger, 77% showed progression over an average of about three years, and eyes that were more advanced at diagnosis were more likely to progress.[2] If you’re a parent, see keratoconus in children.
Whether your keratoconus is progressing is something only repeated measurements can show. Your eye doctor compares corneal scans taken over time.
What scleral lenses do, and don’t do
A scleral lens is a vision correction, not a treatment for the disease. It rests on the white of the eye, arches over the cornea, and holds a layer of saline against it, so the lens’s smooth front surface does the focusing instead of the irregular cone. That can transform how well you see. It doesn’t make the cornea stronger.
The clearest evidence comes from the comparison group in the KERALINK trial. Young people with progressive keratoconus who received standard care, meaning glasses or contact lenses as needed, progressed in 43% of cases over 18 months.[3] Lenses gave them vision, but they didn’t stop the disease.
The practical upshot: if your keratoconus changes, your scleral lens may need to be refitted. Tell your fitter if your vision in the lens slowly gets worse.
What does stop it: cross-linking
Corneal cross-linking uses riboflavin (vitamin B2) drops and ultraviolet light to stiffen the cornea. The FDA approved the first US cross-linking system in 2016, for progressive keratoconus and for corneal ectasia after refractive surgery.[4]
- It works in most young patients. In the KERALINK randomized trial of 60 people aged 10 to 16, keratoconus progressed in 7% of those who had cross-linking, compared with 43% of those who received standard care. Corrected and uncorrected vision were also better in the cross-linking group.[3]
- It may reduce transplants. After the Netherlands introduced cross-linking, about 25% fewer corneal transplants for keratoconus were performed over the next three years than in a comparable earlier period. That’s an observational finding.[5]
- It doesn’t usually replace your lenses. Cross-linking aims to stop the cornea getting worse, not to restore a normal shape, so many people still need glasses or specialty lenses afterward. In a small study of 23 eyes fitted with scleral lenses after cross-linking, corneas stayed stable over the first year of lens wear and vision in the lenses was better than with previous correction.[8]
- Children under 14: the FDA label says safety and effectiveness haven’t been established in this age group.[4]
So sclerals and cross-linking aren’t rivals. They do different jobs, and many people have both. See scleral lenses vs cross-linking.
Stop rubbing your eyes
This is the part most directly in your control. In a large review of risk factors, eye rubbing was linked to about three times the odds of having keratoconus (odds ratio 3.09).[6] That’s an association, not proof that rubbing causes it, but it’s one of the strongest risk factors known, alongside family history.
There’s also some evidence that stopping helps. A French clinic told 77 people with keratoconus to stop rubbing their eyes and followed them for an average of 53 months. On average, their corneas didn’t change significantly. Of the 26 eyes (out of 153) that did show progression, 25 belonged to people who admitted they were still rubbing or doing other at-risk things.[7] It was one clinic with no comparison group, so it can’t prove cause and effect, but it fits what cornea specialists advise.
Practical ways to break the habit, which many wearers describe:
- a cool compress or chilled preservative-free artificial tears when your eyes itch
- treating allergy or dry eye with your eye doctor’s help, so there’s less urge to rub
- noticing your triggers: waking up, taking lenses out, tiredness, screens
- if you rub in your sleep, asking your doctor about protective options
Questions to ask your eye doctor
- Is my keratoconus progressing? What are you measuring, and how often?
- Am I a candidate for cross-linking? If not now, what would change that?
- Should I stop wearing my lenses before scans or the procedure, and for how long?
- Could allergies or dry eye be making me rub, and how can we treat that?
- If my cornea changes, how will we know my lens needs refitting?
For the full picture of keratoconus and lens options, see our keratoconus page.
Common questions
Do scleral lenses slow down keratoconus?
No. A scleral lens corrects how light enters your eye, but it doesn't strengthen the cornea. In the KERALINK trial, the comparison group received standard care with glasses or contact lenses as needed, and keratoconus progressed in 43% of them over 18 months, compared with 7% of those who had cross-linking.
Can scleral lenses make keratoconus worse?
A scleral lens is designed to vault over the cornea without pressing on it, and in a small study of 23 cross-linked eyes, corneas stayed stable over a year of scleral lens wear. Your fitter checks how the lens sits at each visit. If your vision in the lens gets worse over time, tell them, because a change in the cornea underneath may need a new lens or a referral.
Does keratoconus stop on its own?
It tends to slow with age. A large review of untreated eyes found that younger people progressed more, and that steepening over a year was smaller for every decade older a person was. But there's no age at which it's guaranteed to stop, so follow-up scans still matter.
Is cross-linking safe for children?
The FDA label for the US-approved cross-linking system says safety and effectiveness haven't been established in children under 14. Because keratoconus often progresses fast in young people, cornea specialists weigh this individually. Our page on keratoconus in children covers this in more detail.
What can I do instead of rubbing my itchy eyes?
Many wearers use a cool compress or chilled preservative-free artificial tears. If itching is frequent, ask your eye doctor about treating allergy or dryness, since that often makes it easier to stop rubbing.