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.

There are different types of colour blindness. Achromatopsia is the least common. The most common type of colour blindness is red-green colour deficiency. Less common is yellow-blue colour blindness.

Achromatopsia is different because it often causes total colour blindness. Most achromats have complete achromatopsia, which means they can see only black, white, and grey. Unlike other types of colour blindness, achromatopsia can involve other vision problems, including light sensitivity, poor visual acuity, and nystagmus.

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:

Simple visual aids like magnifiers can help you see details.
Independent living skills can help with the practicalities of life at home.
Get equipment and learn skills for personal care.
Use contrast at home, making finding items you regularly use easier.

Support organisations

Children with any kind of visual impairment will benefit from support long before they start school because they learn in a slightly different way. We can support you and your child at this early stage:

Our early years development and habilitation service provides My Time to Play, a free service for children from birth to four. Your child will learn new skills, and you can meet other families in a group setting.

We've produced activity sheets you can use at home for learning through play. These activities are easy to do at home and help support your child's concept development, sensory skills, fine and gross motor skills, self-help and independence, and communication skills.

Our nursery rhyme songbook is a collection of well-known songs with movements and actions to help your child learn about their body.

We can help you plan for your child to start school for the first time and support you in the process of getting the extra help they may need at school.

Our Specialist Education Support Team has Qualified Teachers of children with a Vision Impairment who can give advice and information. We can help choose the right school, explain the support your child is entitled to, and help with the necessary paperwork.

When choosing a choosing a nursery, school, or college, our checklist of questions can help ensure you've asked everything you need to. You'll be looking at how settings adapt their teaching to your child's needs. This could include seating them near the front, using large-print and software.

We have helpful information about Education, Health and Care Plans (EHCPs), which your child may need for extra support at school.

We can also help with choosing and funding assistive technology and equipment. If you'd like to apply for a free iPhone or iPad for your child, find out about our Tech for All programme.

As well as extra help in education, your child may need some social and emotional support. They may feel self-conscious about having achromatopsia. For example, constant eye movement with nystagmus can be noticeable to others, and wearing dark tinted lenses can also mean appearing visibly different to their peers. Getting support can help grow your child's confidence and self-esteem. We offer family support at every stage of their development. You can also contact us for advice on finding support groups.

Frequently asked questions

The impact of achromatopsia on vision can vary from person to person. If it causes visual impairment with a significant impact on daily life, you may be considered to have a disability. Personal Independence Payment (PIP) or, for children under 16, Disability Living Allowance (DLA) are benefits that aim to help with the extra costs of living with a disability.

Even if your achromatopsia isn't considered a disability, you can still get help and support. Our Guide Line can give advice and information about how we can help you or your child.
Achromatopsia is a stable condition that doesn't tend to worsen with time. If someone with achromatopsia also has refractive errors such as farsightedness or nearsightedness, it's important to have regular eye exams and up-to-date prescription glasses or contact lenses. Regular eye exams can also help identify any new eye conditions that may develop.
Achromatopsia doesn't cause blindness but does significantly affect what people can see compared with normal vision. Achromatopsia affects the light-sensitive cells in the retina so that most people with the condition see only in black, white and grey. They may also have nystagmus, reduced visual acuity, and struggle to see clearly in bright light.
There's currently no treatment for achromatopsia. Research is happening into potential gene therapy treatments which could restore some function to the affected retinal cells. Genetic testing is usually available for people with achromatopsia. Knowing the specific gene mutation responsible for your achromatopsia may mean future treatments are an option if approved for use.

Get in touch

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

Medically reviewed by: The Royal College of Ophthalmologists on 28/07/2022

Edited by: Nick Astbury FRCS FRCOphth FRCP
Clinical Associate Professor
LSHTM

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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