Albinism

Overview

What Is Albinism?

Albinism (AL-beh-niz-im) is an inherited condition that leads to someone having very light skin, hair, and eyes. It happens because a person has less melanin than usual in their body. Melanin gives skin, hair, and eyes their color. Except for vision problems, most people with albinism are just as healthy as anyone else.

Top Things to Know

• Albinism happens when the body makes less than usual amounts of melanin, leading to lighter skin, eyes, and hair.
• Symptoms may include lighter coloring than expected, poor vision, and eye movement problems.
• Care includes seeing eye doctors, wearing glasses if needed, and protecting skin from the sun.
• Kids with albinism usually inherit a gene for it from both parents.

Signs & Symptoms

What Are the Signs & Symptoms of Albinism?

Albinism that affects the skin, hair, and eyes is called oculocutaneous (ok-yuh-low-kyu-TAY-nee-iss) albinism. This leads to skin, hair, and eyes that are lighter than you would expect based on someone’s ethnic background or race. Symptoms vary based on how much melanin someone makes. These include:

• pale skin
• hair that is very light blonde, brown, or reddish
• eyes that are pink, light blue, green, gray, or light brown
• eyes that are sensitive to light
• a “lazy eye” (called strabismus)
• back and forth movement of the eyes (called nystagmus)
• vision problems

Albinism that only affects the eyes is called ocular albinism. Sometimes albinism can be part of other medical conditions.

Causes

What Causes Albinism?

Most of the time, someone has albinism because they inherited the gene for it from both their mother and father. Having just one of the genes (being a “carrier") does not give someone albinism. Most parents of children with albinism do not have any symptoms.

Sometimes, albinism is caused by a new gene change (called a mutation).

People with albinism, or those who have family members with it, can talk to a genetic counselor to understand how albinism can run in families.

Diagnosis

How Is Albinism Diagnosed?

Doctors usually diagnose albinism when a child is noted to have skin, hair, or eyes that are much lighter than other family members. They’ll also look for changes in the eyes to help make the diagnosis.

Treatment & Care

How Is Albinism Treated?

Most people with albinism are otherwise healthy. Treatments mainly include taking care of the eyes and skin.

To care for the eyes, kids with albinism:

• need to see the ophthalmologist (eye doctor) often in the first two years of life and have regular follow-up care after that
• can wear special glasses or contact lenses to protect their eyes from the sun
• can get treatment for nystagmus and other eye problems

People with albinism have an increased risk of developing skin cancer. To protect the skin, they can:

• Wear broad-spectrum sunscreen with at least SPF 30 when going outside and reapply every 2 hours.
• Try to stay in the shade as much as possible.
• Cover up with clothing that has UPF (ultraviolet protection factor) protection.
• Wear a hat.
• Check their skin for changes or suspicious marks.
• See their dermatologist (skin doctor) every 6–12 months for a skin check.
• Avoid tanning beds.
• Avoid medicines that make them more sensitive to the sun.

How Can Parents Help?

If your child has albinism:

• Take your child to all medical visits recommended by the healthcare team.
• Help your child get involved in activities, sports, and hobbies that they enjoy.
• Talk about albinism. Teach your child that looking different is OK and that albinism is just one part of their life. If your child has trouble managing their feelings, talking to a counselor can help.
• Learn about albinism together. The healthcare team is a great resource. You also can find information and support online at National Organization for Albinism and Hypopigmentation (NOAH).