Living with Leber congenital amaurosis

Leber congenital amaurosis (LCA) is a severe retinal dystrophy (a group of rare genetic eye conditions) and is sometimes known as Leber hereditary optic neuropathy or Leber optic atrophy. There are different types of LCA, but all affect the retina and optic nerve and typically involve sudden and painless vision loss in one or both eyes.

LCA is a rare, inherited retinal condition and it usually becomes apparent in early life.  It's the leading reason for inherited vision loss in children. It can be difficult to learn that your child has a vision impairment. However, with practical and emotional support, your family can help them to adapt, learn the skills they’ll need for the future, and reach their potential.

You can find more information about the causes, symptoms and treatments of Leber congenital amaurosis on the Moorfields Hospital website.

Living independently with Leber congenital amaurosis

Along with severe vision loss, your child might also experience nystagmus (involuntary eye movement) or strabismus (when the eyes point in different directions) – your child’s ophthalmologist may be able to help them manage these symptoms. They might also be referred for a Low Vision Assessment (LVA). This will help you better understand which aids – such as magnifiers or lighting – could support them with everyday life.

We’re also here to support you and your family. At Guide Dogs, we have a wide range of services, both with and without guide dogs, and a team of experts who can work with you to understand your needs and agree on a plan that’s right for you. The ways we could help you include:

• Habilitation or rehabilitation of important life skills
• Our guide dog service
• Our Vision Rehabilitation Specialists can make recommendations best suited to you and your needs
• Tips and advice to help you make the most of your remaining vision
• Resources and support on how technology can improve your independence

Working with Leber congenital amaurosis 

It's possible to work with a vision impairment, particularly 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
• Visual 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, the grant could fund a taxi to and from work if public transport isn't an option, or to pay for a support worker or specialist equipment. 

Driving 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 vision impairment, often from an early age, which typically rules out driving.

Knowing this, you can support your child in learning 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, or getting a guide dog could be an option for your child too. What’s more, 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 about getting mobility training for your child. 

When they’re old enough, you can support them by helping them learn public  transport routes. People who're registered as sight impaired can get help with travel costs, for example, there’s a Disabled Persons Railcard and they could be eligible for discounts on bus travel too. 

Support for people living with Leber congenital amaurosis

Our Habilitation Specialists can support children and young people in developing lifelong skills, supporting them into independence as they grow. For young children, this may be about understanding the world around them and how they can take those first steps to navigate their way around it. We can support them starting nursery, transitioning to a new school, or into higher education, as well as supporting them to get around their local community safely and with confidence. We can also help them develop important everyday skills, such as preparing a meal or going shopping, which are key to an independent life. 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.