Living with ocular albinism

Ocular albinism is a rare condition that causes eye problems due to a lack of pigment in the eye. The pigment melanin is normally present in the eye and contributes to normal vision. Ocular albinism is a genetic condition that can't be cured, but there are many ways people with the condition can make the most of their vision.

Children with ocular albinism will benefit from early support to make the most of their vision and manage symptoms such as nystagmus and strabismus. Although ocular albinism can affect daily life, it won't stop your child from living an independent life and doing things they enjoy.

Managing your child's ocular albinism

If your child has ocular albinism, they will have regular appointments with their ophthalmologist, a specialist eye doctor. Your child's ophthalmologist will monitor them for vision problems and make sure they have appropriate prescription glasses or contact lenses to help make the most of their sight. Your child may see other healthcare professionals, too, like an orthoptist who specialises in eye movement and how the eyes work together.

Regular eye exams can detect eye conditions often associated with ocular albinism, including nystagmus, strabismus (squint) and amblyopia (lazy eye).

Although ocular albinism can't be cured, there are many ways to help your child manage their symptoms. These include:

• Low vision aids like handheld magnifiers and large print materials can make learning and reading easier.
• Dark-tinted lenses and UV sunglasses help with light sensitivity in bright light.
• Extra support during physical activities for young children with nystagmus who may have poor depth perception.

If there is a history of ocular albinism, you and your family members may be referred for genetic testing.

Can you drive with ocular albinism?

The DVLA has a minimum required standard of vision for driving. This includes visual acuity and peripheral vision (field of vision). Ocular albinism is one of the eye conditions you must tell the DVLA you have since it causes poor visual acuity and vision problems, including nystagmus. Some people with ocular albinism also have difficulty with depth perception, making driving difficult.

Speak to your ophthalmologist for advice about driving. If your child's ophthalmologist thinks their vision won't meet the minimum standard for driving when they reach 17 years old, you can help them learn to get around in other ways. They can learn the skills they'll need for getting around safely, and using public transport. Find out how to get mobility training for your child.

Can you work with ocular albinism?

Living with a visual impairment isn't a barrier to working, but you may be entitled to some extra support and adjustments to help you at work. The Equality Act requires employers to make reasonable adjustments to support people with impairments at work.

The type of support you need will depend on how severe your visual impairment is due to ocular albinism. Examples of what might help include:

• Low vision aids like magnifying lenses to help with reading.
• Adjustments to lighting to help with light sensitivity.
• Time off for appointments and check-ups.
• A flexible working pattern to help you manage if your sight varies from day to day (for example, due to nystagmus). 

Access to Work is a scheme that gives employers grants to help pay for equipment or services you need for work. A grant could help you get safely to and from work if you can't use public transport or pay for a support worker.

Support for ocular albinism

Children with ocular albinism are typically diagnosed at a young age. Getting support for them during their early years can make all the difference to their development and confidence living with the condition.

If your child has a visual impairment, we can support you during their early years:

• 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.
• You can use our activity sheets at home for learning through play. Activities are easy to do at home and support your child's concept development, sensory skills, fine and gross motor skills, self-help and independence, and communication skills.
• Our nursery rhyme songbook has well-known songs with movements and actions that help your child learn about their body.

We can also help plan for your child starting school and support you in getting the extra help they may need.

• 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 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.

Children with ocular albinism may feel self-conscious about the condition and how it affects them. Having the proper support early on can help them fulfil their potential and build their self-esteem. We offer family support at every stage of their development.

Frequently asked questions

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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