About Albinism

What is Albinism?

Albinism is an inherited condition. People with albinism have little or no melanin, which is a chemical that colors our skin, eyes and hair. Therefore, people with albinism lack pigmentation in the skin, eyes and hair.

Albinism affects people of all races and ethnicities and is much more common than you may think. In fact, one out of every 17,000 people worldwide has some form of albinism. In some populations, it occurs in one out of every 200 births.

Most forms of albinism are recessive, which means that a child inherits one abnormal gene from each parent. Most children with albinism are born to parents with normal pigmentation. These parents — like one in every 75 people — are carriers for albinism. A carrier is someone who has one abnormal gene and one that functions normally. Because the functional gene overrides the abnormal one, these people do not have albinism themselves. However, they are still able to pass the abnormal gene on to their child.

Although people with albinism always have problems with vision, the degree varies greatly. Some are legally blind, while others have vision that is good enough to drive a car. Most are able to read without using Braille.

How is Albinism Diagnosed?

Albinism can be diagnosed by an experienced ophthalmologist or optometrist with a simple eye exam. There are confirmatory tests, such as genetic testing, but they are not yet perfected. For more information on genetic testing, contact a qualified genetic counselor. Genetic counselors are generally affiliated with universities and/or children’s hospitals. If a diagnosis is unclear, a special vision test, known as a VEP (Visual Evoked Potential), can sometimes be used to rule out a diagnosis of albinism.

How to Learn More About Albinism

To learn more about albinism, how albinism impacts vision, other medical concerns, and suggestions if your child is newly diagnosed, please click on the menu items to the right of this page just under the ‘Learn More’ heading.  To read about other families’ perspectives on living with albinism click on the section just below this paragraph titled ‘Family Perspectives’.

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A Family's Perspective…

  • A Father Contemplates His Wishes: As a parent of a visually impaired child, I of course want my daughter to have all of the tools, aides, technology and hopefully one day medicine available to improve...

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  • Useful Links for Albinism: General Medical Information About Albinism International Albinism Center Wikipedia's Albinism Page Albinism's Eye Conditions eMedicine Albinism Information Kid's Health Skin Cancer Information Medical Information About Albinism Sub-Types Griscelli Syndrome Information Chediak-Hagashi Information HPS Information OCA1a OCA 1b OCA2 OCA4 HPS Other Albinism-Related Groups Albinism Through the Eyes...