Living with keratoconus

Keratoconus happens when the cornea, the clear 'window' at the front of the eye, thins and becomes distorted in shape. Typically, corneas are shaped like a dome, but keratoconus causes the cornea to become cone-shaped, affecting vision.

Wearing prescription glasses or contact lenses can correct your eyesight, so most people’s day-to-day life isn’t impacted by keratoconus.

Living independently with keratoconus

Tommy shares his experience of living with keratoconus.

If you have keratoconus, you'll need regular eye tests to monitor any changes to your vision and to 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.

For many 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, corneal collagen cross-linking, and corneal transplants, that are available through the NHS.

However, if keratoconus affects your sight so much that you are eligible to register as vision impaired, and it affects daily life, get in touch with us to find out how we can best support you.

At Guide Dogs, we have a wide range of services, both with and without guide dogs, and a team of experts who can work with you to understand your needs and agree on a plan that’s right for you.

The ways we could help you:

• Habilitation or rehabilitation of important life skills
• Our guide dog service
• Our Vision Rehabilitation Specialists can make recommendations best suited to you and your needs
• Tips and advice to help you make the most of your remaining vision
• Resources and support on how technology can improve your independence

Working with keratoconus

You should be able to work if you have keratoconus. With treatment, your eyesight can usually be corrected, giving you clear vision. Just make sure that you have regular eye tests, as keratoconus can cause your prescription to change often. 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.

Driving with keratoconus

As many 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 GP  for advice on when it's safe to drive again.

Support for people living with keratoconus

Some people living with keratoconus are eligible for extra help from the NHS towards the costs of eye tests and prescriptions, for example. 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, Guide Dogs is here to help you 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

Support groups or organisations can be a great way to connect with other people who have the same condition, or to find out other tips on how to cope with keratoconus. For example, Keratoconus Group supports its community by helping them find keratoconus-friendly optometrists and hosting online events.