Albinism

Overview

Albinism is a group of inherited conditions where the body makes little or no pigment (melanin). Melanin gives colour to the skin, hair and eyes, and helps protect the skin from the sun. People with albinism usually have very light skin and hair, and often have vision problems.

Albinism is rare. Worldwide, about 1 in 17,000 people have some form of albinism.

Albinism affects males and females equally and appears in all races. Most people who have albinism inherit the gene changes from both parents.

Symptoms

Common symptoms

• Very light skin, hair and eyes compared to other family members
• Vision problems, such as poor eyesight, wobbly eyes (nystagmus), crossed eyes (strabismus), or strong light sensitivity
• Skin that burns easily in the sun

Symptoms in children

• Vision problems may become more obvious as a child grows
• Skin can sunburn very quickly, even on cloudy days
• They may need extra help at school, such as sitting at the front or using large-print books

Symptoms in older adults

• Years of sun exposure can cause sun damage and raise the risk of skin cancer
• Vision problems may stay fairly stable, but regular eye exams are important to monitor changes

Causes

Main causes

• Albinism is caused by changes (mutations) in genes that help the body make melanin.
• These gene changes are inherited from your parents, and several different genes can be involved depending on the type of albinism.

Risk factors

• Having a parent or sibling with albinism, or a family history of the gene changes that cause albinism.
• Albinism is not caused by anything a mother does during pregnancy.

When to see a doctor

See a doctor urgently if:

• If you or your child has eye pain, sudden vision loss, or very severe sunburn with blistering, get medical help the same day.

Book a routine appointment if:

• If you or your child has very light skin, pale eyes, or eye problems that could be albinism, see a doctor for a calm discussion and a proper diagnosis.
• If you have albinism, see your doctor regularly for skin checks and eye exams.

Diagnosis

A doctor usually diagnoses albinism by asking about family history, examining the skin, hair and eyes, and checking vision. Genetic tests can confirm the exact gene change.

Tests that may be done

• Eye examination by an eye specialist (ophthalmologist)
• Genetic testing using a blood or saliva sample
• Electroretinogram, a painless test that measures how the retina responds to light, sometimes ordered in special cases

What to expect at your appointment

You may be referred to an eye specialist and a genetic counsellor. The diagnosis process is safe, usually done as an outpatient, and helps you understand what support you or your child may need.

Treatment

Treatment focuses on protecting the skin and eyes, supporting vision, and helping you live independently. There is no cure, but there are many practical ways to manage symptoms and stay healthy.

Self-care at home

• Use sunscreen with a high sun protection factor (SPF) every day, and reapply it regularly, even when it is cloudy.
• Wear protective clothing, including long sleeves, wide-brimmed hats, and UV-blocking sunglasses.
• Use low-vision aids such as magnifiers, large-print materials, bright lighting, and screen-reader technology.

Medical treatments

Eye doctors may prescribe glasses, contact lenses, or low-vision devices. They may also suggest eye muscle surgery to reduce wobbling or crossed eyes. For the skin, doctors treat sun damage early to prevent skin cancer. No medication specifically cures albinism. Always discuss any treatment options with your healthcare team.

When is surgery considered?

Surgery on the eyes is sometimes done to reduce nystagmus (wobbly eyes) or to align crossed eyes. Skin surgery may be needed to remove suspicious moles or early skin cancers.

Living with this condition

Plan ahead for sun protection every single day, even in winter. Carry sunscreen, sunglasses, and a hat with you. At school or work, ask for seating close to the front, good lighting, and access to large-screen tools or printed materials.

Lifestyle tips

• Protect your skin every day with clothing and sunscreen.
• Wear good-quality sunglasses that block ultraviolet (UV) light.
• Use visual aids and technology, such as screen-reading software, large screens, or adjustable reading stands.

Diet and exercise

Eat a balanced, healthy diet with plenty of fruit and vegetables. There is no special diet for albinism, but good nutrition supports overall health and eye health. Exercise is safe and encouraged, just remember sun protection when outdoors.

Mental health and emotional wellbeing

Some people with albinism feel self-conscious about their appearance or frustrated by vision problems. These feelings can affect self-esteem and mood. Talking to family, friends, or a counsellor can help. You deserve kindness and support.

Prevention

Albinism cannot be prevented because it is passed on through genes. If you have a family history, genetic counselling can help you understand the chances of having a child with albinism.

Vaccines

Vaccination is important for everyone, including people with albinism. Follow your local immunisation schedule and talk to your doctor or nurse about any questions.

Screening programmes

Newborn screening for albinism is not routine, but regular skin checks and eye exams are important throughout life. Ask your doctor how often you should be checked.

Complications

If left untreated

• Sunburn and skin damage from too much sun exposure
• Increased risk of skin cancer, especially on sun-exposed areas
• Vision problems that may affect learning, driving, or daily activities if they are not supported

Long-term outlook

With good sun protection, regular eye care, and emotional support, people with albinism can live full, healthy and independent lives. Many enjoy successful careers, close families, and active hobbies. Early support makes a real difference.

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