What is albinism?

Albinism is a group of genetic conditions in which a person has no or very little melanin pigment in their skin, hair and eyes. Albinism occurs in all racial and ethnic groups throughout the world. In Australia, about 1 in 17,000 people have some type of albinism.

It is important for people with albinism to protect their skin and eyes from the sun and have their eyes checked regularly.

What are the types of albinism?

There are 2 main types of albinism:

• oculocutaneous albinism — the hair, skin and eyes are all affected
• ocular albinism — is much less common, and involves only the eyes, while skin and hair colour appear similar to that of family members

There are also some extremely rare conditions where people have albinism and other health problems. Examples are Hermansky Pudlak syndrome, Chediak Higashi syndrome and Griscelli syndrome.

What causes albinism?

Albinism is a genetic condition that you are born with. Both parents pass down the genes for albinism, even if they are not directly affected. There is no simple test to determine whether a person carries this gene.

What are the signs and symptoms of albinism?

Some children with albinism are born with pinkish-white skin and white hair. Their eyes are usually light grey, blue or hazel, although they can look pink in the light.

People with albinism usually have poor vision. Glasses can help, but some have poor vision even with glasses.

Several eye conditions can affect people with albinism including:

• nystagmus — which is horizontal back and forth movement of the eyes
• photophobia — which is sensitivity to bright light and glare

How is albinism diagnosed?

Albinism is often obvious from a baby's appearance when they're born, so usually, it is diagnosed at birth. If your doctor notices signs of albinism, genetic testing can help confirm the diagnosis.

FIND A HEALTH SERVICE — The Service Finder can help you find doctors, pharmacies, hospitals and other health services.

Living with albinism

People with albinism have a higher risk than others of sunburn, skin problems and skin cancer. Australia's sunny climate means that good sun protection for the skin is essential, as well as sunglasses to protect the eyes.

Children with albinism may benefit from some form of visual aid. They may need glasses or contact lenses, a monocular for distance viewing, or a magnifier and enlarged print for reading.

People with albinism can also suffer from discrimination. Good support for the person with albinism and their family can help.

What are the complications of albinism?

Albinism can cause eye problems, but otherwise does not cause other health problems. Albinism does not affect general health, intelligence, or lifespan.

ASK YOUR DOCTOR — Preparing for an appointment? Use the Question Builder for general tips on what to ask your GP or specialist.

Resources and support

The Albinism Fellowship of Australia provides support and education to people with albinism, parents of children with albinism, and their families and friends.

The Vision Australia factsheet outlines vision difficulties and the type of help that children with albinism may need.

Visit healthdirect's genetic disorders guide to learn more about genes, types of genetic disorders and where to go for help and more information.

Call healthdirect on 1800 022 222 at any time to speak to a registered nurse (known as NURSE-ON-CALL in Victoria) for more information and advice.