Has your child just been diagnosed with keratoconus? This guide is an introduction to what you need to know.
What is Keratoconus?
Keratoconus (KC) is an eye condition that affects the cornea. It usually develops in the teens or early twenties and is not very common. The early signs can be easy to miss, even for optometrists. It often affects only one eye initially, and the brain is good at compensating. Your child may only realize their vision has changed if they cover their “good” eye. They might also find their vision gets worse later in the day, in low light, or they may complain of headaches. In most cases, KC will eventually affect the other eye, but it may take years and can remain mild in the second eye.
Although it is a progressive condition, the rate at which it progresses varies greatly from person to person. The good news is that there is a treatment called corneal collagen cross-linking (CXL) that can often stop KC from progressing.
What Causes Keratoconus
Research into the causes of KC continues, but it is likely a combination of genetic and environmental factors. While it can run in families, most cases are “random” and no other family members are affected. People with KC are more likely to have allergies like asthma, eczema, and hay fever, which can make them more likely to rub their eyes. Vigorous eye-rubbing can trigger KC or make it worse.
KC is more common in people from some ethnic backgrounds, such as those with South Asian, African, or Afro-Caribbean, and Middle East heritage. It also affects up to 1 in 10 people with Down’s Syndrome.
Effects of Keratoconus
KC is often diagnosed during the teens, a critical time for education with exams like GCSEs and A levels. It’s important to inform the school so teachers can understand the condition and make any necessary adjustments for the student.
The effect of KC on vision depends on its severity and may change over time. Possible effects include:
Ghosting (a faint second image) or multiple images.
Blurred vision, sensitivity to bright light, and worse vision in low light.
Increased short-sightedness, headaches, and tiredness.
KC can also affect a young person’s self-confidence and lead to them withdrawing, which may impact relationships with friends and family.
Treatment
If KC is found by a High Street optometrist, it’s important to get a referral to a corneal specialist at a hospital eye clinic.
Corneal Cross-linking (CXL): CXL can help to reduce the progression of the condition. It is available on the NHS if the condition is shown to have worsened. Regular scans of the eye are important because the rate of progression varies. CXL is not a cure and doesn’t restore vision to what it was before KC developed, but it can stop it from getting worse.
Contact Lenses: In the early stages, glasses or soft contact lenses may correct vision. As the condition progresses, specialist rigid gas permeable lenses may be needed. For young people up to 19 in full-time education, contact lenses fitted in a hospital eye department are free. If the young person has finished education, lenses are issued at the NHS rate of about £60 per lens.
Corneal Transplants: In a few cases, a corneal transplant may be needed, but the need for these has been halved since the introduction of CXL. The success rate for transplants for Keratoconus is over 90%.
With current treatment options, KC should not limit a young person’s educational opportunities or career options, though there may be a period of adjustment.