Frequently Asked Questions about Albinism

Albinism
What is Albinism?

The word “albinism” refers to a group of inherited conditions. People with albinism have little or no pigment in their eyes, skin, or hair. They have inherited altered genes that do not make the usual amounts of a pigment called melanin. One person in 17,000 has some type of albinism. Albinism affects people from all races.

Vision Problems

People with albinism always have problems with vision (not correctable with eyeglasses) and many have low vision. Vision problems in albinism result from abnormal development of the retina and abnormal patterns of nerve connections between the eye and the brain. It is the presence of these eye problems that defines the diagnosis of albinism. Therefore the main test for albinism is simply an eye examination.

Skin Problems

While most people with albinism are fair in complexion, skin or hair color is not diagnostic of albinism. People with many types of albinism need to take precautions to avoid damage to the skin caused by the sun such as wearing sunscreen lotions, hats and sun-protective clothing.
Albinos Need Continual Protection from the Sun

Albinos can enjoy the outdoors by limiting their exposure to sunlight, wearing appropriate hats and clothing, and using sunscreens diligently. However, the task of preventing damage to the skin over a lifetime is a difficult one. Preventing sunburn is important, but not sufficient to prevent sun-damaged skin.

Avoiding Harmful Rays

It is important not to rely on sunscreens, and to limit exposure to the sun. Most ultraviolet rays come between 9 a.m. and 5 p.m. Planning outdoor activities for morning or evening is the single most important measure for people with albinism to avoid sun damage. Even cloudy days can be dangerous: don't be fooled.

Clothing and Hats

Clothing is the primary protective shield. Colored clothing and denser-woven clothing allow less sunlight penetration.

Albinos should wear long sleeve shirts, long pants, and shoes and socks.

Hats are essential. Hats with brims at least 3 inches wide all the way around are best for protecting the face, ears, and neck. Hats with narrower brims may not protect the neck and ears.

Sunscreen

Albinos should use broad-spectrum sunscreens labeled SPF of 20 to 30 on any exposed skin. Better than sunscreen, however, is simply covering skin with clothing and staying out of direct sunlight. It helps to apply the sunscreen one-half hour before going into the sun, since some of the screening chemicals bind to the skin. Remember that rubbing with towels or clothing can remove protection.

Sun Glasses

Albinos should wear sunglasses to protect their eyes from damaging sunlight, as well as for comfort.
Sun Damage: What to Watch For

Other

Ultraviolet light over many years creates "actinic" changes in skin, and increases the risk of skin cancers.

Actinic changes include fine wrinkling, discoloration, leathery thickening, and clusters of tiny red streaks on the skin surface.
The best treatment for these actinic changes is prevention. It is difficult to reverse these changes with chemical or surgical treatments.

People with albinism can prevent serious problems with skin cancers by taking protection against the sun, by examining their own skin for long-lasting "irritated" spots, and by getting regular physician exams of skin as adults.

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