Living with coloboma

Coloboma is a relatively rare eye condition that happens in around 1 in 10,000 people (Source: Medline Plus). For many people living with coloboma, it doesn't affect their vision. However, it can cause vision problems for some people, so learning that your child may have coloboma can be a worrying time.

There are treatments for iris coloboma. For other types of coloboma, such as optic nerve coloboma, the focus is on monitoring your eye health and making the most of your useful vision. There are support groups and resources to help you or your child come to terms and manage the condition.

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Managing your coloboma

Coloboma is often first diagnosed by a newborn screening check that all new babies have. It's not always possible to know early on exactly how your child's sight might be affected. Your child will see an eye specialist (ophthalmologist) regularly to monitor their vision as it develops. Your child's specialist will advise you on how to support your child's vision as they grow, such as helping prevent lazy eye (amblyopia).

Some types of coloboma can be treated with contact lenses or surgery. But if coloboma isn't treatable, there are still ways to make the most of your vision and live independently.

It's important for anyone living with coloboma to continue having regular eye examinations in adulthood. Eye exams will monitor your sight and ensure any other problems are well managed. For example, refractive errors such as nearsightedness, long-sightedness, and astigmatism can be corrected if caught early.

Coloboma and driving

Many people living with coloboma won't experience reduced vision and should have no problems with driving.

Even if your vision is affected, you may be able to drive if your sight is good enough. You must meet the DLVA's minimum required eyesight standard, so speak to your ophthalmologist for advice.

If you develop another condition, such as cataracts or glaucoma, this could affect your eyesight, and you may need to notify the DVLA.

Can you work with coloboma?

Many people living with coloboma have only minor vision problems, for example, being more sensitive to light.

Even if your coloboma causes visual impairment, you can still work with some support. Your employers have a legal duty to make reasonable adjustments to meet your needs at work.

There can be practical solutions that help, such as:

The Access to Work scheme also provides employers with grants to buy equipment or services to support you at work.

That said, some job roles do require a specific level of vision in both eyes, such as being a pilot, a police officer, and some armed forces roles. Ask your child's eye specialist for more information when they start thinking about their career choices.

Support for people living with coloboma

There are various resources, charities, and services that can support you or your child with coloboma. Practical support can help with the skills needed for an independent, active life. And emotional support can help deal with the feelings your or your child might sometimes have about living with a vision impairment. 

 

Frequently asked questions

Get in touch

You can contact us to find out about services and support tailored to your individual needs.

Reviewed in March 2022

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