Living with achromatopsia

Achromatopsia is a rare retinal disease that affects around one in 30,000 to 50,000 people (Source: Orphanet). It's usually inherited and affects children from an early age causing colour blindness, reduced vision, and severe light sensitivity (photophobia, also known as day blindness).

There's currently no cure, so the focus is on managing symptoms, for example, by wearing dark tinted lenses in daylight. If your child is diagnosed with achromatopsia, it's natural to worry how their sight will be affected and how they'll cope. But with the right support from an early age, they'll be able to learn the skills they need to live independently.

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Managing achromatopsia and your vision

Living with achromatopsia can have challenges, as it not only causes colour blindness but often nystagmus, light sensitivity and reduced visual acuity, making it harder to see clearly. As there are currently no approved treatments for the condition, support focuses on managing these symptoms to make the most of your vision as comfortably as possible.

Different aids and adjustments can help manage life with achromatopsia, such as:

  • Glasses tinted red can help cope with light sensitivity in daylight or bright light.
  • If you have refractive errors such as farsightedness or nearsightedness, wearing prescription glasses or contact lenses can correct this.
  • Many people find that wearing dark tinted lenses and UV blocking sunglasses helps cope with bright conditions, even indoors.
  • Visual aids and technology can help when you need to identify colours. For example, smartphone apps, such as Seeing AI, can tell you the colour of things and have modes for people with colour blindness.

Having regular eye tests is important for anyone living with an eye condition. Eye exams can detect any new vision problems unrelated to achromatopsia that may need treatment. The NHS recommends everyone has an eye test at least once every two years.

Achromatopsia and driving

Some eye conditions must be reported to the DVLA, but this doesn't include colour blindness and nystagmus if your vision meets the minimum eyesight rules for driving. The rules cover both visual acuity and field of vision.

Many people with achromatopsia have reduced visual acuity and struggle to see well in bright light. Wearing tinted lenses can help improve your vision in daylight. There are also alternative ways for people with colour blindness to navigate traffic signs. For example, if you know what the sequencing of traffic lights means, you don't have to rely on seeing their colours. It's best to speak to your eye doctor for advice about whether your eyesight meets the required standard for driving.

If it's likely that your child's achromatopsia may rule out driving when they're older, you can help your child learn the skills they'll need for getting around safely and independently in other ways. You can help them learn to use public transport and find out about getting mobility training for your child.

Can you work with achromatopsia?

Having a visual impairment isn't a barrier to working, but the symptoms of achromatopsia may mean you need some extra support and adjustments to help you at work. Under the Equality Act, employers must make reasonable adjustments that enable people with impairments to work. You can talk to your employer about your condition and the kind of adjustments that will help, for example:

  • Visual aids like magnifying lenses to help with reading.
  • Lighting adjustments that help you see more clearly.
  • Time off for appointments and check-ups.
  • A flexible working pattern that can help if you have 'bad eye' days, for example, the option to work from home.

Some jobs need people to have colour vision, for example, some armed forces roles, aviation jobs such as pilots and air traffic controllers, and other technical roles.

If your child has achromatopsia, it's a good idea to speak to their specialist for advice before they begin making career choices. There are still many different jobs they can do, and you can encourage and support their interests in the wide range of areas open to them.

Support for achromatopsia

The support people living with achromatopsia need can vary depending on their symptoms. People with incomplete achromatopsia can see some colours and may have fewer symptoms than people with complete achromatopsia.

If you have total colour blindness and symptoms such as nystagmus, severe light sensitivity, and reduced visual acuity, you may need more support to manage daily life with achromatopsia.

Ophthalmologists can refer people for a low vision assessment (LVA) to explore which visual aids could help. Local social services can also offer support for keeping safe at home and getting around safely.

There are many ways to make the most of your vision and manage daily life:

Frequently asked questions

Get in touch

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

Reviewed in April 2022

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Information to help you continue developing your independence and ways to enhance your day-to-day life skills.

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