Living with acanthamoeba keratitis

Acanthamoeba keratitis is a serious eye infection that can be difficult to live with. It can be painful and affect your vision. After a diagnosis of acanthamoeba keratitis, the intense treatment routine can disrupt your everyday routines at first. However, treatment can be effective, especially with early diagnosis, and most people affected won't experience sight loss.

Fortunately, acanthamoeba keratitis is rare, with a rate of around 1.4 per million people. It's more likely to affect contact lens wearers, affecting around 19.5 per million (Source: British Journal of Ophthalmology). The risk factors for acanthamoeba infection with contact lens wear can be reduced by practicing good contact lens hygiene and care.

How long does acanthamoeba keratitis last?

When acanthamoeba keratitis is diagnosed promptly, treatment will typically take three to six months. At first, you'll take medicine very frequently - every hour during the first few days - then gradually less often, making it less disruptive over time.

The symptoms can be unpleasant to live with. For example, some people have intense pain. You'll also probably be more sensitive to light. There are ways to cope with the symptoms. Your doctor may prescribe painkillers for relief. You can cope with light sensitivity by wearing prescription sunglasses in bright conditions, lowering the brightness level on screens, and occasionally wearing an eye patch.

You might be advised to avoid certain activities while recovering, like swimming. People who've had a corneal scrape or have damage to the cornea’s surface (the epithelial layer) may need to avoid showering or getting water in their eyes at first.

You'll have regular follow-up appointments with your ophthalmologist to review your treatment and recovery. In complex cases, treatment of acanthamoeba keratitis can take more than a year.

Acanthamoeba keratitis and driving

The DVLA has a minimum standard you must meet to drive, including visual acuity and field of vision. Acanthamoeba keratitis can affect your sight in the early stages before treatments take effect, and sometimes long-term as well if the cornea is damaged. Speak to your ophthalmologist about whether it's safe for you to drive. They might need to test your sight and confirm whether you still meet the required standard of vision.

Can you work with acanthamoeba keratitis?

It can be disruptive living with acanthamoeba keratitis. The condition is often painful, and treatment can get in the way of daily routines, at least to begin with. You'll probably need some time off work while you're dealing with symptoms and taking frequent medicines.

Depending on how quickly your symptoms improve, you might be able to return to work while still recovering and having treatment. If you're dealing with symptoms such as light sensitivity, it can be a good idea to speak to your employer about reasonable adjustments that could help you manage.

If you experience permanent sight loss from acanthamoeba keratitis, this could have implications for work. You might need more adjustments to carry on working, or perhaps a role change, for example, if you drive at work. Employers have a legal duty to make reasonable adjustments to support people with sight loss. The Access to Work scheme can also provide support. This gives grants to employers to pay for equipment or services such as for help travelling to and from work if you can't use public transport, employing a support worker, and specialist equipment or technology.

Support for acanthamoeba keratitis

There's plenty of practical advice for coping with acanthamoeba keratitis, but sometimes what you need is emotional help. Our Guide Line can help you find local support groups and services. Talking about your feelings can grow your confidence about dealing with the disease and help you feel less isolated.

It's natural to worry about the risk of sight loss with acanthamoeba keratitis. If you develop a visual impairment, it can take time to adjust. There will be lots of support to help you:

• Your eye specialist or clinic can refer you for a low vision assessment (LVA) for advice and support.
• Local social services can advise on keeping safe at home and getting around safely if sight loss affects your mobility.
• You can learn ways to make the most of your vision and new skills for independent living to help you feel more confident.
• Depending on your level of vision, your ophthalmologist may be able to help you register as sight impaired. This is a personal choice but can help get support and benefits such as discounts for public transport, tax allowance, and Personal Independence Payment (PIP).

Support organisations

• AK Eye Foundation
• Acanthamoeba Keratitis Information

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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