To start with, full disclosure : this is a controversial topic. The majority of eye surgeons are still convinced that there is a genetic predisposition to keratoconus, and that eye rubbing is an optional trigger. Other (a growing number) think that this is the sole responsible of keratoconus.

My mentor is the main proponent of the eye rubbing theory. I was a skeptic, and became convinced by learning with him how to properly interview patients on this subject, how to prevent eye rubbing, and by seeing the absence of progression after full awareness of the patients (without cross-linking. We don't do any CXL in my department, ever. KC screening and care is one of our main activity: not doing CXL is a financial loss). My mentor's website : https://www.gatinel.com/recherche-formation/keratocone-2/no-... (No conflict of interest except loyalty).

The main difficulty is that it is almost impossible to design an experiment to prove the theory (if someone has a genius idea, please don't hesitate). Usually other surgeons or students become convinced after visiting the department and spread the good practices back home : still a long way to go.

The harmful eye rubbing is made with the hard parts of the hand (knuckles). It is frequently nocturnal and almost everytime ignored. Awareness comes when the patient has been informed and told to look for this habit. At the second consultation, the eye rubbing is reported in the vast majority of cases. I count the keratoconus patients that deny eye rubbing after 2-3 consultations on one hand. We prescribe a transparent eye shell to sleep with when the patient denies eye rubbing : it allows them to realize that they rub during the night. We prescribe eye drops to ease the eye irritation which triggers rubbing, and instruct to rub the inner part of the eyelid, against the nose (no eye deformation) if necessary. Sleep position is frequently pathological too (eye vs hand or arm contact. In those cases the KC is very asymetrical).

Doctors in our team can predict the eye rubbing habit frequency and intensity by looking at a corneal topography. It is incredible that the role of this habit was ignored so long. I suppose that we doctors don't talk enough with our patients. The financial incentive of performing CXL and surgeries is so clearly detrimental the the adoption of those practices.

Hi, I am really interested in reading this conversation, as I have keratoconus and had CXL surgery about ten years ago, and am very happy with it. The CXL stopped the keratoconus progressing and I only need to wear glasses instead of the more invasive things other patients mention (contact lenses, corneal grafts and transplants, etc).

It would be good if this intervention to convince patients to cease eye rubbing was more common in keratoconus patients. There is often a delay of several months between when keratoconus is suspected or diagnosed and CXL is carried out (in my case I had to wait 6 months in one eye and 9 months in the other, during which time it got a bit worse).

About eye rubbing, yes there should be more awareness of it! In practical terms, I would recommend that everyone tries wearing an eye-mask when they’re asleep (I recently bought this one, and I'm happy with it https://www.amazon.co.uk/gp/product/B07DW32QYJ ). This is because it's more difficult to notice and prevent yourself from rubbing your eyes when you're half-asleep.

There are several reasons why I like wearing an eye mask while in bed, and some even apply to people who don’t have keratoconus: 1. It stops me rubbing my eyes when I'm in bed. 1. It might stop allergens getting into my eyes when I'm asleep, for example I notice much less rheum on my eyes when I wake up in the morning. When I’m in bed is when I notice that my allergies are worst. 3. It helps me sleep better, it's like having blackout curtains in my room. 4. If I want to get up in the middle of the night, I will be able to see better in the dark.

Are there any correlations between people who wear contacts and have keratoconus? I'm asking, because handling contacts effectively requires you to rub the eyes a little every time you take the contacts out. Or is that kind of deformation not enough?

(empirical, non scientific opinion): usually, wearing contact lenses tends to prevent vigorous eye rubbing, during the day. Also, people with sensitive, itchy eyes tend to avoid contact lenses: this is a two-way relationship. Nefarious eye rubbing is usually related to a daily, compulsory "habit", involving a vigorous pressure on the eye using the knuckles or the side of the index, also frequently present while sleeping.