Living well with keratoconus: what 13 people told researchers

If you have just been told you have keratoconus, the question behind all the others is usually a simple one: will I still be able to live a normal life? A Norwegian team took a different route and simply asked people. Their open-access paper, published in Ophthalmic and Physiological Optics in 2026, reports long interviews with 13 adults who have lived with keratoconus for years. We read the full text. Here is what they did, what people said, and how far you can lean on it.

What the study did

This was a qualitative interview study: no treatment groups, no measurements and no statistics. The aim was to understand experience, not to test anything.

• Who was invited: adults aged 18 or older who had been diagnosed with keratoconus for at least 3 years. People with other conditions likely to affect quality of life were excluded.
• How they were found: an open invitation was posted in Keratokonus Norge, a Facebook patient group with almost 1700 members. Study information went to 21 people who responded. Six did not reply, two did not meet the criteria and five were excluded because of other diagnoses, leaving eight. Four more were recruited through three optometry practices, and one came by personal referral.
• Who took part: 13 people, six women and seven men, covering every age decade from 20 to 70 years. All had lived with keratoconus for more than 5 years.
• Their eyes: eight had previously had corneal cross-linking in one or both eyes, two had a corneal transplant in one eye, and three had never had corneal surgery. Seven wore scleral lenses, two wore other contact lenses, three wore spectacles and one used no correction.
• The interviews: all were done remotely by one researcher, an optometrist, and averaged about 35 minutes. Transcripts were analysed with a recognised method called Systematic Text Condensation.

The authors report no external funding and no competing interests.

The five themes

1. A good life with keratoconus

Nearly all participants said a good and fulfilling life was possible, whatever the severity of their keratoconus. One participant put it this way in the study: "it is possible to have a good life, despite keratoconus".

2. Contact lenses changed things

Participants described the step from spectacles to well-fitted contact lenses as transformative. Those whose lenses worked well said they rarely thought of keratoconus as a disease. Those whose lenses did not work said it defined their day.

People also spoke about redness, irritation, itch, swollen eyelids and deposits on the lens surface, and about limited wearing time that shaped computer work, driving and sport. Lens wear meant planning ahead and carrying handling and cleaning equipment. Fitting took several visits, sometimes with repeated refits, which participants found time-consuming and costly. See our guide to scleral lenses for keratoconus.

3. Symptoms that persist, and the emotional side

Even with treatment and correction, almost all participants mentioned light sensitivity, visual distortion, and reduced night vision and contrast. Several described vision as a limited resource that runs down through the day, with headaches and exhaustion by evening.

Very few said keratoconus affected their emotional wellbeing day to day. Frustration was common when lenses failed, though, and many still worried about going blind, particularly during periods of progression, even though they knew the likelihood was low. Some worried about passing keratoconus to their children. See our post on family screening with corneal maps.

4. Coping strategies

Participants described a practical toolkit:

• acceptance, planning ahead and taking breaks from lenses and from visual effort
• extra aids such as computer or reading glasses, tinted filters, sunglasses and magnifiers
• simple non-optical helpers such as a cap or hat for glare, audiobooks, read-aloud software and reversing cameras
• learning about their own condition, which some said reduced worry
• being open at work, which led to adjustments such as larger screens or more flexible tasks
• talking with other people who have keratoconus

Most did not cope by avoiding things, although some stayed away from concerts, films or long reading.

5. Eye care is key

Regular follow-up, easy access, short waits and seeing the same clinician over time all gave participants a sense of security. Follow-up was with an optometrist, or shared between an optometrist and an ophthalmologist, depending on severity and progression. Clinicians who seemed uninterested in or unfamiliar with keratoconus were linked, in participants' accounts, with distrust, delayed diagnosis and correction that did not work.

What the studies can't tell us

Read this as a set of honest accounts, not as a forecast for you.

• Thirteen people. The authors acknowledge some experiences may be under-represented.
• Partly self-selected. Eight of the 13 volunteered through a Facebook patient group. People who join a support group and offer to be interviewed may differ from those who do not.
• Norwegian. Norway's health and funding arrangements, and its culture, are not New Zealand's. The authors themselves note that a French interview study found fear and anxiety far more prominent.
• Long-term patients only. Everyone had more than 5 years of experience. It does not describe the first months after diagnosis.
• People with other conditions were excluded, which the authors say may have biased the picture.
• No clinical data. Severity and vision were not measured, so the findings cannot be tied to a stage of keratoconus.
• The interviewer was an optometrist, which the authors accept probably shaped the questions and the interpretation.
• No comparison and no numbers. The study cannot show that lenses, cross-linking or any coping strategy caused people to do well. It is not generalisable.

What this means for you in Hamilton

Our reading is modest: people with long experience of keratoconus described real, ongoing difficulties and still described good lives, and they tied that to correction that worked and to eye care they trusted.

That fits the pathway we describe throughout this site. Cross-linking is performed by an ophthalmologist, but the starting point is a keratoconus-focused optometrist who makes the diagnosis, documents any change with sequential corneal maps, refers at the right moment and fits specialty lenses such as sclerals. Our post on corneal cross-linking explains why that monitoring matters.

The optometrist team at Rose Optometry in Hamilton provides keratoconus care, and you can book a keratoconus assessment online. If you already wear scleral or rigid lenses and need handling accessories, a scleral lens insertion tool and a lens removal tool are available from the Rose Optometry online store. The study did not test these or any other product, and what suits you is something to discuss with your optometrist. The optometrists at Rose Optometry are Anjali Hira, Emilie Lawson, Jacqueline Rowe, Jagrut Lallu, Jason Shen, Jessica Wood and Stella Wong, and keratoconus care is part of their clinical practice.

Reference

• Lundanes E, Brembo EA, Leren L, Sundling V. Living Well with Keratoconus: Implications for Person-Centred Eye Care. Ophthalmic and Physiological Optics. 2026 (published online 12 September 2026). PMID 42730915. https://doi.org/10.1007/s44402-026-00188-z