Living with Leber congenital amaurosis

Leber congenital amaurosis (LCA) is a rare disease that affects about two or three in every 100,000 people (Source: NICE). There are different types of LCA, but all affect the retina and optic nerve and typically involve severe vision loss beginning in young adult life (10-30 years old) or rarely, earlier.

If your child has a diagnosis of LCA, you might be worried about how it will affect them and how best to support them. It's natural to worry, but with the right help for you all as a family, they'll be able to fulfil their potential and learn the skills they'll need for the future.

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Managing life with Leber congenital amaurosis

Most people with Leber congenital amaurosis will have severe vision loss. LCA is one of the more severe retinal dystrophies, preventing the photoreceptor cells in the retina at the back of the eye from working correctly. While research is underway into potential treatments, the focus for most children is to support them in making the most of any useful vision they have and learning the skills for life with a visual impairment.

There are some ways to help look after your child's eyes. Try to prevent them from rubbing their eyes too much, as it can lead to keratoconus. If they have refractive errors (such as farsightedness), these can be corrected with prescription glasses. If their eyes are very sensitive to light (known as photophobia), dark lenses may help them in bright conditions. Your child’s ophthalmologist may be able to help if they have nystagmus or strabismus, often associated with Leber congenital amaurosis.

Your child will have a team of professionals to support them, including their ophthalmologist. They may be referred to a low vision clinic for a low vision assessment. This can identify the aids that will help your child in day-to-day life, from lighting and magnifiers, to technology and other equipment

Education support for Leber congenital amaurosis

Getting support for your child's education can begin long before they start school. Young children with a vision impairment will learn in a slightly different way. We can support you and your child to develop lots of different skills, including:

  • Our early years development and habilitation service, My Time to Play is a free service for children from birth to four. In a group setting, they'll learn new skills, and you'll meet other families with shared experiences.
  • You can use our activity sheets at home for learning through play. Using everyday items, these activities help you support your child's concept development, sensory skills, fine and gross motor skills, self-help and independence, and communication skills.
  • Try our nursery rhyme songbook with your child. We've collected well-known songs with movements and actions that will help your child learn about their body. 

There can be a lot to consider when planning for your child to start school. You might need to research suitable schools, understand how to get extra help for your child, and meet different professionals involved in supporting your child's education. We can help you through every step of this journey, including through to university, in the following ways:

  • Our Specialist Education Support Team has Qualified Teachers of Children with a Vision Impairment who can provide advice and information. We can help you choose the right setting for your child, understand the support they're entitled to, complete the complicated paperwork involved, and find extra support.
  • When choosing a nursery, school, or college for your child, our checklist of questions can help make sure you've covered everything you need to know to help make a decision.
  • We have a wealth of information to introduce you to Education, Health and Care Plans (EHCPs), which you may need to apply for to get additional support for your child's education.
  • You can also get help choosing and funding assistive technology and equipment for your child. If you're interested in applying for a free iPhone or iPad for your child, find out about our Tech for All programme.

Can you drive with Leber congenital amaurosis?

The DVLA have minimum eyesight rules for driving, which covers both visual acuity and field of vision. Most people with Leber congenital amaurosis will have a significant visual impairment, often from an early age, which typically rules out driving.

Knowing this, you can support your child in learning the skills and tactics for getting around safely and independently in other ways. Many people with vision impairment use a cane to help them move around. Getting a guide dog could be an option for your child too. We have developed mobility training for children of all ages. The sooner your child begins learning early movement skills, the better prepared they will be. Find out how about getting mobility training for your child.

People registered as sight impaired can get help with travel costs, for example, the Disabled Persons Railcard and discounts for bus travel.

Can you work with Leber congenital amaurosis?

It's possible to work with a sight impairment, with some adjustments and support. Employers must make reasonable adjustments that meet the needs of people with disabilities. This is a legal duty under the Equality Act.

Practical things that can help people with vision impairment at work can include:

  • Screen reader software, voice recognition programmes, apps and accessibility features on digital devices
  • Brighter lighting
  • Visuals aids such as magnifiers

The Access to Work scheme provides grants to help pay for equipment or services beyond employers' reasonable adjustments. These can be used in different ways, for example, to fund a taxi to and from work if public transport isn't an option, to pay for a support worker or specialist equipment.

People with vision impairment say that it can make finding work harder. Knowing your rights can help you feel more confident talking to potential employers about your support needs and the skills you bring to the workplace.

Some jobs demand a specific level of vision in both eyes, for example, being a pilot, a police officer, and some armed forces roles. You can speak to your child's specialist for advice and talk to your child early on to help them with their career interests and choices.

Support for Leber congenital amaurosis

Having the right support around you can make all the difference to living with sight loss as a family. It's not only about practical help and equipment, but having someone to listen who understands your experiences can really help.

Other families living with Leber congenital amaurosis can be a great source of emotional support. We can connect you with other families in similar circumstances through our monthly online peer support network. Find out more about the family support we offer.

Your child's self-confidence might benefit from having a buddy dog as part of the family. Guide Dogs provide buddy dogs as companions for children with visual impairment. Find out how you can apply for a buddy dog.

Local social services can provide a range of practical services and advice. This could include home adaptations where needed, play schemes, respite care, and advice about financial help such as benefits. The first step is to request an assessment. Get more tips on accessing social services from our experts.

Frequently asked questions

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

Edited by: Nick Astbury FRCS FRCOphth FRCP
Clinical Associate Professor

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.

Get in touch

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

For more support...

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

Find out how technology can help you live independently with sight loss, from specialist assistive technology to apps and Apple accessibility features.

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