After a keratoconus diagnosis: what the first months look like

You have a name for it now

Someone has looked at a colour map of your cornea and told you it is keratoconus. You may feel relief that the glasses were not the problem, and worry about what comes next. Both are reasonable. The next few months are not a race, but a few things are worth doing in order.

This guide is for the stage after diagnosis. If you are still working out whether the signs fit, what keratoconus is covers that. If you are already weighing lens designs, scleral versus RGP lenses compares them.

One thing to settle early: who does what. In New Zealand an optometrist maps and monitors the cornea and fits lenses, and an ophthalmologist decides on and performs cross-linking or surgery. You do not need a referral to see an optometrist, and we refer you on when the measurements say so.

The first change: stop rubbing, and treat the itch

Healthify NZ states that keratoconus is known to be associated with eye rubbing, and both Healthify and Health New Zealand advise against rubbing because it can damage the cornea. It is the one risk factor you control, and it costs nothing. The hard part is that rubbing is usually a response to itch from hay fever, eczema or allergy, so the itch has to be dealt with too.

• Notice when you rub: on waking, after screens, during pollen season. Awareness is half of stopping.
• Cold, not pressure: a clean cool flannel over closed eyes can take the edge off an itch without pushing on the cornea.
• Ask your GP or our optometrists about treating the allergy itself, as Healthify suggests, rather than living with the itch.
• Tell the people around you. A partner or parent who says you are rubbing helps more than willpower.

Monitoring: the second map matters more than the first

A single topography map shows the shape today. It cannot tell whether the cornea is still changing, and that question drives every big decision that follows. So the plan after diagnosis is a repeat map, and then more at intervals our optometrists set from your age, your measurements and how fast things have moved.

Day-to-day vision is a poor guide here. The cornea can keep steepening while your vision feels the same, which is why we measure rather than ask. Bring any maps or prescriptions from other practices, because old data is the baseline the new scan is compared against.

Younger people usually need closer monitoring. The American Academy of Ophthalmology's EyeWiki notes keratoconus typically begins in early adolescence and progresses into the mid-20s and 30s, and that children tend to present with more advanced, faster-moving disease. Our keratoconus page explains how mapping and monitoring work here.

Cross-linking: what it is, who decides, and when

Corneal cross-linking uses riboflavin (vitamin B2) drops and ultraviolet light to stiffen the cornea so it is less likely to keep changing shape. Health New Zealand describes it as a treatment that does not reverse keratoconus but may stop it worsening, and notes you will still need glasses or contact lenses afterwards. Moorfields Eye Hospital says the same: the aim is to stabilise, not to improve vision.

Who decides is an ophthalmologist, not an optometrist. RANZCO's Choosing Wisely guidance is that cross-linking is not for every patient with keratoconus: it is indicated when there is clear evidence of progression on refraction and corneal scans, and younger patients may be considered without proven progression when progression is strongly suspected. That is why the repeat map above matters so much.

In practice, when our measurements show change, we discuss it with you and refer you to an ophthalmologist. Whether that is through a public hospital eye clinic or a private clinic depends on where you live, the service's criteria and your circumstances; the ophthalmologist assesses eligibility, explains the procedure and its risks, and performs it. We do not perform cross-linking or any surgery.

Getting your vision sorted, and the subsidy

Vision correction runs alongside the progression question, not after it. In early keratoconus glasses may still do, and Health New Zealand notes specially designed soft lenses can work as the cornea distorts. When glasses no longer give clear vision, a rigid corneal lens or a scleral lens creates a smooth new front surface over the cone. Fitting is a process of trial lenses and follow-ups, not a single visit.

Health New Zealand runs a contact lens subsidy for lenses supplied for medical need. It is claimed by an optometrist or dispensing optician who holds an agreement with Health New Zealand, covers lenses rather than an examination on its own, and its criteria and amounts are set by Health New Zealand, not by us. The current page is in the sources below. Our insurance and funding page explains how it is handled here, and our post on keratoconus treatment and management in Auckland sets out the whole plan.

Driving, work and school

Keratoconus mostly affects you in the gaps: the drive home at night, the whiteboard from the back row, a long day at a screen. Tell your employer or school early that your vision is being sorted and may fluctuate between appointments. Simple things help in the meantime: bigger text, a seat near the front, screen brightness turned down against glare, and avoiding night driving until your correction is settled.

Driving in New Zealand has eyesight standards set by NZTA (Waka Kotahi). Our optometrists can tell you whether you meet them with your current glasses or lenses, and what to do if you do not. We have not quoted the standard here because it should always be read from NZTA's current pages rather than from a third party.

When this practice is the wrong place

Keratoconus has one true emergency: acute corneal hydrops. The inner layer of a very thin cornea gives way, fluid floods in, and the cornea swells and clouds. You notice a sudden drop in vision in one eye, pain and strong light sensitivity, sometimes after a bout of rubbing, coughing or sneezing. Healthify NZ advises seeing a doctor immediately for sudden severely blurred vision, or severe light sensitivity with redness and pain. That means the hospital eye clinic or emergency department the same day.

The general eye emergencies apply too. Call 111 or go to the nearest emergency department for sudden loss of vision, a shadow or curtain across the vision, flashes with a sudden shower of floaters, a chemical splash, a red and painful eye with light sensitivity, or an eye injury. If you are unsure, Healthline on 0800 611 116 is free and open 24 hours.

We are the right place for the slow work: mapping, monitoring, fitting and refitting, and the referral when the map moves. EyeWiki notes that most hydrops episodes settle on their own over two to four months, and lens fitting can resume once the ophthalmologist is happy.