Living with keratoconus

Keratoconus is relatively common, affecting between 50 to 200 in 100,000 people (Source: Medscape). For most people living with keratoconus, day-to-day life shouldn't be affected. Prescription glasses or contact lenses can correct your sight, and other treatment options can help even with advanced keratoconus.

You'll have regular eye tests to monitor any changes to your vision and ensure you get the right treatment. There's plenty of support and resources to help you cope if you do experience challenges.

Managing your keratoconus

If you have keratoconus, you'll need regular eye tests to monitor any changes to your vision and ensure you get the right keratoconus treatment at the right time.

• Your optician will be able to detect changes to your prescription and ensure your glasses or contact lenses are up to date.
• Talk to your optician if you find you have difficulties with contact lenses. The condition can increase the chance of having dry eyes, as can wearing contact lenses for long periods of time. Your optician may give you eye drops and alternatives like more comfortable lens types to help with any discomfort.

Always see your optician if you notice any changes to your sight or have any concerns, especially if you experience sudden changes to your vision.

Is keratoconus a disability?

For most people living with keratoconus, the condition is not classed as a disability. That's because your vision is usually corrected by treatments such as prescription glasses or contact lenses. There are also effective treatments for advanced keratoconus, such as corneal implants and corneal transplants (though not all are widely available on the NHS).

However, if keratoconus affects your sight so much that you are eligible to register as vision impaired, and it affects daily life, you may be eligible for support such as Personal Independence Payment.

Keratoconus is also associated with other conditions, such as Down's syndrome, Ehlers-Danlos syndrome (EDS), Osteogenesis Imperfecta (OI), and others. This may mean you're eligible for disability support, even if you're not vision impaired.

Keratoconus and driving

As most people with keratoconus can have their vision corrected, driving shouldn't be a problem. Just make sure your vision meets the DVLA's minimum required standard while wearing your glasses or contact lenses.

If you have treatment such as corneal implants or a cornea transplant, you may not be able to drive while you recover. Ask your doctor for advice on when it's safe to drive again.

Keratoconus at work

Having keratoconus shouldn't stop you from working. With treatment, your eyesight can usually be corrected, giving you clear vision.

But, you should still keep having regular eye tests, as keratoconus can cause your prescription to change frequently. If your prescription isn't up to date, there's a greater risk of eye strain and headaches, which can be made worse in office roles that involve a lot of screen time.

If you need corneal implants or surgery to treat advanced keratoconus, you may need to take some time off work to recover.

Living independently with keratoconus

Some people living with keratoconus are eligible for extra help from the NHS, for example, towards the costs of eye tests and prescriptions. This could help you if your glasses or lenses need to be updated frequently.

It's rare for keratoconus to lead to vision loss, but if it does, there's support available to help make the most of your vision and manage everyday life.

Your optometrist can also refer you for a low vision assessment (LVA) so that you can get personalised advice and support. Local social services can also advise you about keeping safe at home and getting out and about safely too.

Support organisations

• Keratoconus Group

Frequently asked questions

The Royal College of Ophthalmologists champions excellence in the practice of ophthalmology and is the only professional membership body for medically qualified ophthalmologists. The RCOphth is unable to offer direct advice to patients. If you’re concerned about the health of your eyes, you should seek medical advice from your GP, optometrist or ophthalmologist.

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