Living with Fuchs' dystrophy

Adults in their 50s and 60s, particularly women, are more likely to be living with Fuchs' dystrophy (also called Fuchs' endothelial corneal dystrophy) (Source: Orphanet).

As Fuchs' dystrophy usually progresses slowly, many people won't develop symptoms for years after diagnosis. There are ways to cope with mild symptoms, and at a later stage, if necessary, corneal transplant surgery is an option. Managing life with the symptoms of Fuchs' dystrophy can be difficult at times, but there is support to help you make the most of daily life.

Managing your Fuchs' dystrophy

Fuchs' dystrophy is a corneal dystrophy that typically progresses slowly over decades. You'll need regular eye exams so your optometrist can monitor your disease progression. They'll also check your general eye health and detect other common eye conditions such as cataracts and glaucoma. Treatment for these, for example, cataract surgery, may need careful management alongside your Fuchs' dystrophy.

At an early stage, taking sodium chloride eye drops or ointment can alleviate symptoms. You can also try gently blowing warm air onto your eyes with a hairdryer. This helps the fluid build-up to evaporate. Tinted eyeglasses can help if you have trouble with light sensitivity and seeing halos around bright lights.

At a later stage, blisters can develop on the outer layer of cells on the surface of the cornea (the epithelium). These can cause eye pain, but painkillers can give some relief. Your eye doctor may also prescribe soft contact lenses to promote healing.

Fuchs' dystrophy and driving

You must report any eye condition that affects both eyes to the DVLA. If your eyesight still meets the eyesight rules for driving, you may be able to carry on driving. Always speak to your optician or ophthalmologist for advice first.

Can you work with Fuchs' dystrophy?

People with Fuchs' dystrophy can live for many years without symptoms. If you begin having symptoms, your employer can help you, for example, give you time off for appointments. Employers must make reasonable adjustments that support you to continue working. Talk to your employer about the kind of changes that may help, and these could include:

• Lighting and desk changes to control glare and contrast.
• Visual aids such as magnifiers to help with reading.
• Large print materials and products for you to use.

Support for Fuchs' dystrophy

Life won't change very much after the diagnosis of Fuchs' dystrophy. You'll have regular eye exams to monitor the condition and, if mild symptoms develop, taking eye drops may become part of your daily routine.

If your symptoms worsen, for example, you get persistent blurry vision or pain, you may need more support with daily life, at least until treatment improves your eyesight. There are many simple and practical ways to make the most of your vision, for example:

• Simple visual aids like magnifiers can help you to better see details.
• Using independent living skills to manage day-to-day life at home.
• Using practical equipment and skills for personal care.
• Introduce more contrast to your home environment, so finding items is a lot easier.

Your ophthalmologist may be able to refer you for a low vision assessment (LVA) to explore the kind of aids that will help you. Local social services can also support you to keep safe at home and get around safely with vision loss.

Support organisations

• FuchsFriends UK

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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