Keratoconus guide for parents

What is keratoconus

Keratoconus is a progressive eye condition that affects the shape and thickness of the cornea, which is the clear front surface of the eye. In a healthy eye, the cornea is regular and hemispherical in shape, allowing light to enter and focus properly on the retina for clear vision. However, in keratoconus, parts of the cornea gradually become thinner and weaker, leading to a cone-like bulge and distortion in vision.

Keratoconus usually occurs in both eyes, but it can be highly asymmetrical, meaning it may affect each eye differently. The condition usually starts during the teenage years or early adulthood and can progress over time to around 30 years of age.

Symptoms and risk factors

Signs and symptoms of keratoconus can vary, but some common ones to look out for include:

• Blurred or distorted vision: your child may complain of difficulty seeing clearly, especially at a distance rather than close up. 
• Frequent changes to prescription: vision may change frequently, requiring frequent updates to glasses or contact lens prescriptions.
• Increased sensitivity to light: bright lights or glare may bother your child's eyes.

There is a strong association with allergic diseases such as hay fever, asthma or eczema. It is important to manage them effectively and to minimise eye rubbing as it might potentially weaken the cornea and contribute to the development or progression of keratoconus.

There is an increased risk of keratoconus in younger children with autism, Down’s syndrome and learning disabilities. Keratoconus can run in families, so if a parent or sibling has been diagnosed with keratoconus, there is a greater likelihood that your child may also develop the condition. However, keratoconus usually occurs in individuals without any identifiable risk factors.

If you suspect your child has keratoconus…

Your first point of call would be your local optometrist. They will assess your child’s vision, take their medical and family history paying attention to any risk factors and your concerns and, in some practises, perform scans of the cornea to identify any abnormalities in corneal shape that may indicate keratoconus.

At the appointment, you can ask your optometrist if they are able to achieve a normal level of vision in both eyes for your child with their new spectacle prescription. This could be challenging in keratoconus patients due to progressive corneal irregularities associated with the condition.

Another question to ask the optometrist is if they if they notice an abnormal reflex when they shine a light into your child's eyes during the measurement for glasses. This very characteristic reflex from the eye can be another early indicator of keratoconus.

Being referred to hospital

If keratoconus is suspected, your child could be referred to an eye hospital for confirmation or exclusion of the condition and then regular monitoring every few months in the confirmed cases. Your eye care consultant will assess the rate at which the disease is progressing and will only recommend treatment if there are continuous and visually significant corneal changes.

Treatment options can include specialist contact lenses, or in some cases, surgical procedures like corneal cross-linking or corneal transplantation.

In some patients, there is quite a rapid progression in both eyes, in others it can progress only in one eye and remain stable in the other eye, and in some cases the progression is slow in one or both eyes. In some patients, and this can happen in any age group, keratoconus can spontaneously stabilise in one or both eyes, and generally the progression stops at around the age of 30.

With early detection and appropriate management, almost all children and young adults with keratoconus can maintain good vision and lead normal lives. By ensuring they have regular follow-up appointments with eye care professionals, adhere to their treatment plans as well as providing support and understanding throughout their journey, you can help your child navigate the challenges associated with this condition and promote their overall eye health and well-being.

Written in association with

Professor Frank Larkin

Consultant ophthalmic surgeon