Albinism

What Is Albinism?

Albinism is an inherited condition that leads to someone having very light skin, hair, and eyes. It happens because they have 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. 

What Are the Signs & Symptoms of Albinism?

Albinism (pronounced: AL-beh-niz-im) that affects the skin, hair, and eyes is called oculocutaneous (pronounced: 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.

Signs and symptoms 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.

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 you albinism. Most parents of children with albinism do not have any symptoms. 

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

How Is Albinism Diagnosed?

Doctors usually diagnose albinism when someone has 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.

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, people with albinism:

• need to see an ophthalmologist (eye doctor) regularly
• 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 their 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 with SPF protection.
• Wear a hat.
• Check their skin for changes or suspicious marks.
• See their dermatologist  every 6–12 months for a skin check.
• Avoid tanning beds.
• Avoid medicines that make them more sensitive to the sun.

What Else Should I Know?

If you have albinism:

• Go to all medical visits recommended by the care team.
• Learn all you can about albinism. The care team is a great resource. You also can find information and support online at:
  National Organization for Albinism and Hypopigmentation

Because the social scene can be more about fitting in than standing out, people with albinism may face bullying or prejudice. Voicing any frustration or sadness to a family member or friend who understands can help. So can talking to a counselor or therapist to get ideas on coping with any challenges.