• 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 in the U.S.A. has some type of albinism.

  • Most children with albinism are born to parents who have normal hair and eye color for their ethnic backgrounds. Sometimes people do not recognize that they have albinism.

  • A common myth is that people with albinism have red eyes. In fact there are different types of albinism and the amount of pigment in the eyes varies. Although some individuals with albinism have reddish or violet eyes, most have blue eyes. Some have hazel or brown eyes. However, all forms of albinism are associated with vision problem

  • People with albinism always have problems with vision (not correctable with eyeglasses) and many have low vision.

  • The degree of vision impairment varies with the different types of albinism and many people with albinism are “legally blind,” but most use their vision for many tasks including reading and do not use Braille.

  • Some people with albinism have sufficient vision to drive a car. 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.

  • 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.

  • While most people with albinism have very light skin and hair, not all do. Oculocutaneous (pronounced ock-you-low-kew-TAIN-ee-us) albinism (OCA) involves the eyes, hair and skin.

  • Oculocutaneous (pronounced ock-you-low-kew-TAIN-ee-us) albinism (OCA) involves the eyes, hair and skin.

  • Ocular albinism (OA), which is much less common, involves primarily the eyes, while skin and hair may appear similar or slightly lighter than that of other family members.

  • Some people with albinism use bioptics, glasses which have small telescopes mounted on, in, or behind their regular lenses, so that one can look through either the regular lens or the telescope. Newer designs of bioptics use smaller light-weight lenses. Some states allow the use of bioptic telescopes for driving.

  • In less pigmented types of albinism, hair and skin are cream-colored and vision is often in the range of 20/200.

  • In types with slight pigmentation, hair appears more yellow or red-tinged and vision may be better.

  • Early descriptions of albinism called these main categories of albinism “complete” and “incomplete” albinism. Later researchers used a test that involved plucking a hair root and seeing if it would make pigment in a test tube. This test separated “ty-neg” (no pigment) from “ty-pos” (some pigment). Further research showed that this test was inconsistent and added little information to the clinical exam.

  • The genes for OCA are located on “autosomal” chromosomes. Autosomes are the chromosomes that contain genes for our general body characteristics, contrasted to the sex chromosomes.

  • Neither of these gene copies is functional in people with albinism.

  • However, albinism is a “recessive trait”, so even if only one of the two copies of the OCA gene is functional, a person can make pigment, but will carry the albinism trait

  • People with albinism are sensitive to glare, but they do not prefer to be in the dark, and they need light to see just like anyone else. Sunglasses or tinted contact lenses help outdoors. Indoors, it is important to place lights for reading or close work over a shoulder rather than in front.

  • NOAH The National Organization for Albinism and Hypopigmentation. PO Box 959, East Hampstead, NH 03826-0959 Phone: 800 473-2310 (US and Canada) Phone: 603 887-2310 Fax: 800-648-2310

  • Albinism Through The Eyes of Bianca

  • POSITIVE EXPOSURE, founded in 1997 by former fashion photographer Rick Guidotti and Diane McLean, MD, PhD, MPH, is a highly innovative arts organization working with individuals living with genetic difference. Positive Exposure

  • One of the most horrifying and perhaps little know aspects of Albinism is the killing of these people. Persecution of people with albinism