Treatment and support for people with albinism 

Albinism itself does not need to be treated, but the associated skin and eye problems often do.

Eye problems

Many babies with albinism may seem to have severely impaired vision during the first few months of life, but their vision often improves significantly by the time they are a few months old. This is known as delayed vision maturation.

However, their vision is unlikely to ever reach normal levels, so they may need help to improve their sight and adapt to their low vision.

Glasses and contact lenses

If the child is short-sighted (myopia) or long-sighted (hyperopia), glasses or contact lenses may improve their vision.

Glasses or contact lenses can also be used to correct astigmatism, which is when the cornea (front of the eye) is not a perfectly curved shape.

Regular eye tests will be needed to check the prescription of the glasses or lenses. See NHS opticians for more information about eye tests.

Low vision

As the vision of a person with albinism never fully develops, it is not possible for glasses or contact lenses to totally correct their vision. However, there are a number of low vision aids available, including:

  • large-print or high-contrast (for example, white text on a black background) books and printed materials, such as school printouts and exam papers
  • magnifying lenses
  • a small telescope or telescopic lenses that attach to glasses to read writing in the distance, such as a school blackboard
  • a special computer with a large screen, or software that can convert speech into typing or typing into speech
  • tablets and smartphones that allow you to magnify the display to make writing and images easier to see 

The Royal National Institute of Blind People (RNIB)  provides more information about living with low vision, including:

There is no reason why, with appropriate help and support, most children with albinism cannot attend a mainstream school.

Photophobia

It may be possible to reduce a person's sensitivity to light (photophobia) by wearing sunglasses or tinted glasses. A wide-brimmed hat can also be worn outside. The hat's fabric should be a dark colour and not shiny, so less light is reflected into the eyes.

Squint

squint (strabismus) is where one eye looks in a different direction to the other. They are a common childhood condition and are often treated with glasses to correct the vision problems that may be causing the squint.

If your child's squint has caused them to develop a "lazy eye" (where the vision in the affected eye gradually deteriorates because the brain ignores the signals being sent from it), they may also benefit from wearing a patch over their "good" eye to encourage their other eye to work harder.

Patches are most effective before a child reaches seven or eight years of age. Most children will need to wear the patch for a few hours a day for several weeks.

In some cases, surgery may be carried out to improve the alignment of the eyes and help them work together.

Read more about squint surgery

Nystagmus

Nystagmus is involuntary eyes movements, usually from side to side. This causes reduced vision that glasses and contact lenses cannot correct.

There is currently no cure for nystagmus, but it's not painful and does not get worse. There are certain toys or games that may help the child make the most of the vision they have. An ophthalmologist (a specialist in eye conditions and their treatment) will be able to provide further advice.

Occasionally, surgery may be an option. There is a type of surgery called "tenotomy of horizontal eye muscles" that divides and then reattaches some of the eye muscles. The aim is to reduce the frequency and degree of eye movement.

The National Institute for Health and Care Excellence (NICE) has said that while this procedure is safe, it is not yet clear how effective it is. For more information, see the NICE guidance about tenotomy of horizontal eye muscles for nystagmus.

An ophthalmologist will be able to advise you about whether surgery is appropriate and what the risks and benefits are.

Skin problems

As a person with albinism has a lack of melanin (pigment) in their skin, they are at increased risk of sunburn and skin cancer, which are caused by sunlight damaging the skin.

Sunburn

People with albinism should wear sunscreen with a high sun protection factor (SPF). An SPF of 30 or more will provide the best protection.

Sunscreen should be thickly applied at least 15 minutes before going out in the sun. For maximum protection, choose a lotion that protects against both UVA and UVB rays.

You should also:

  • avoid going out when it is very hot and the sun is at its strongest (between 11am and 3pm)
  • when buying sunglasses, choose a pair that have UV filters
  • when out in the sun, cover up with a hat and loose-fitting clothing, such as a long-sleeved top

Read more about preventing sunburn.

Skin cancer

Having pale skin increases your risk of skin cancer, as does previously burning your skin in the sun.

People with albinism should meticulously follow the advice above to avoid sunburn and check their skin regularly for signs of skin cancer, such as a new spot or growth on their skin.

Read more about the symptoms of skin cancer.


Bullying

A child with albinism may experience bullying or name-calling as a result of their condition.

If your child is being bullied, it may help to ask them what is happening and speak to their school. Read more about bullying, including advice for parents.

A child with the condition may also find it difficult to make friends and play with other children in a group, which may be partly due to a tendency to invade other children's personal space by getting very close to see things.

Children and adults with albinism may benefit from getting in touch with other people who have the condition. The Albinism Fellowship has a contact person network that can provide advice and support locally.

Charities for people with vision problems may also be able to offer help and support.

Page last reviewed: 04/11/2014

Next review due: 04/11/2017