I HAVE JUST BEEN DIAGNOSED!!

WHAT YOU SHOULD DO
Receiving a keratoconus diagnosis can be life-changing and shocking, and cause a mix-bag of emotions like denial, anger, confusion and fear.
It is natural to feel this way….

After the initial shock, it is important to take control. Practical steps must be considered. Non-invasive resources are available to restore vision such as rigid contact lens adaptation. These should always be considered first.

Being diagnosed with keratoconus can cause some legitimate stress and concerns.  Keratoconus is presented as a potentially evolving disease. This is true, but evolution is linked to one condition: that the patient diagnosed with keratoconus would continue to rub his eye(s).

If you are yourself concerned by this diagnosis, which you have just discovered, relax: you can preserve your visual future if you really care not to rub your eyes, and treat all the risk factors that lead to this bad habit.

Controls can be carried out at regular intervals. The evolution of the keratoconus is slow and conditioned by eye rubbing.

You will find numerous examples on this site of patients who did not show any aggravation of the disease, by becoming aware, then by ceasing to rub their eyes. If they succeeded, why not you?

There should never be any urgency to perform a surgical intervention in keratoconus.

Beware of physicians who would immediately schedule an appointment for crosslinking or corneal surgery. Consult only unbiased, trustworthy sources when you do your research on how to manage keratoconus. There is no surgical emergency in keratoconus management, and at the time of diagnosis, it is often no indication to perform techniques such as cross-linking or intracorneal segment implantation immediately. Intracorneal ring insertions may not always lead to visual improvement. Crosslinking does not always halt the progression of keratoconus and can sometimes lead to complications like corneal scarring and infection. Consider a second opinion if these procedures are being offered to you immediately upon diagnosis.

Different physicians are likely to have different philosophies and approaches in keratoconus management: but the primary aim in the initial treatment should be to stop the evolution of the disease. The first step would be to identify the source and mode of ocular friction.
HENCE, WHEN KERATOCONUS HAS BEEN DIAGNOSED, IT IS ADVISABLE TO:

THE OPHTHALMOLOGIST: Conduct a scrupulous interrogation to identify the type and frequency of ocular friction and eye rubbing during the day.

This step is crucial to eradicate the practice of eye rubbing.

Eye rubbing can occur without self-awareness; asking a spouse/husband, family member or close friend to monitor and identify such a habit is important.

In children or adolescents with keratconus and a background of allergy, the induction of abnormal friction on the ocular surface has often been observed by their parents. Unfortunately, most parents have not been alerted to the deleterious effects of chronic eye rubbing. Hence, they do not always reproach their children when they rub their eyes repeatedly during the day, or in the phases of waking or falling asleep.

In young adults, rubbing is often done unconsciously, often during the day (at work when most time is spent on the computer screen), or even at bedtime. It is triggered by a sensation of itch (pruritus), or merely a simple irritation of the ocular surface from dry eye related to Computer Vision Syndrome. In less than two decades, prolonged work on the digital screen has become an important occupational or leisure hazard.  Visual fatigue and the reduction of blinking with excessive evaporation of the lacrimal tear film incite inflammation of the ocular surface, causing discomfort and itch, which then trigger the need for rubbing.

In women, the desire to rub their eyes is often suppressed during the day in the presence of eye make-up and / or contact lenses wear, but this restriction is lifted at the end of the day when the eye make-up and contact lenses are removed.

Many individuals rub their eyes in the morning upon awakening. This is usually triggered by the physiological corneal edema at the time of waking.

Rubbing techniques involving the knuckles with grinding movements are the most detrimental to the cornea, which undergoes severe mechanical shearing stress from the repeated compression.

It is important also to probe into the patient’s sleeping position, especially the positional relationship between the head and the pillow or the forearm. This often provides salient information on why the cornea deformation seen in keratoconus is more pronounced on one side than the other. There is a striking relationship between certain sleep positions and the occurrence of unilateral keratoconus. The preferential contact of the most affected eye against the pillow or forearm during the phases of sleep is frequently found in subjects sleeping on the stomach or the side. It is probable that this prolonged compression is not directly causal to corneal deformation, but that it causes more marked irritation of the ocular surface, through local warming and exposure via the eyelids to irritants such as dust, bedding mites, etc.

Legend : Unilateral forms of keratoconus are explained by unilateral (or side predominant) eye rubbing. Sleeping on one side, or on the stomach with the head rotated to one side resulting in prolonged eyelid contact with a mattress or pillow is associated with « unilateral » keratoconus. Many of these unilateral forms occur on the side where the head is supported during sleep, against the pillow (here shown in dots, the patient on the left mimicking her sleeping position). The patient on the right rubbed his left eye much more vigorously than the right. 

THE PATIENT: Stop the eye rubbing

In order to stop keratoconus from progressing, eye rubbing has to cease. However, this is easier said than done.

It is important to identify the reasons for eye rubbing, and in particular, address all risk factors and treat underlying atopy or allergies. It is therefore important to have a holistic approach in managing the patient with keratconus.

The prescription of allergic desensitization and surface wetting agents, antihistamine eye drops and the treatment of chronic blepharitis are all useful adjuvants to reduce irritation and pruritus.

The many cases reported in this diary support these conclusions.

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