What Is Albinism?

Photo of The Kabanga Choir performing "Why Are We Refugees in Our Own Country?"Albinism is a genetic condition caused by recessive genes inherited from both parents. It is rare, and even when both parents carry the recessive gene, there is only a 25% chance of any child having albinism. In the US, 1 out 70 persons carries a gene for albinism. In the US, this means that approximately 1 in every 17,000 persons has albinism. In Africa, albinism is much more common, and approximately 1 out of every 8 persons carries the gene. This results in an occurrence rate of 1 out of every 2,000 people.

In many parts of East Africa, people with albinism are routinely shunned by their communities and excluded from society. They are denied education and lack even a basic understanding of albinism and how to prevent skin cancer and excess sunlight. The average person with albinism in East Africa dies by age 30 from skin cancer, and only 2 percent of people with albinism live to age 40.

Albinism results in the lack of the body’s ability to make pigment, and results in very pale skin, eyes and hair. People with albinism, often called “albinos,” also have varying degrees of visual impairment. As a result, many albinos are legally blind, and are extremely light sensitive.

It is a stable condition, and has no impact on mental capacity. With appropriate protection from UVA and UVB rays, people with albinism can enjoy a normal lifespan. Although most people are familiar with the term “albino,” many people within the community prefer to use the phrase “person with albinism.” We have used both throughout the website in recognition of the widespread familiarity with the former term.

How rare is albinism?

In the United States, it is estimated that 1 in 17,000 people have albinism. It is much more common in areas of East Africa, and can be as high as 1 in 2,000.

Why is albinism more common in East Africa?

Albinism is more common in East Africa because rural tribes have a more isolated genetic pool, and because the society is less mobile.

Can people with albinism drive cars?

Most people with albinism are significantly visually impaired, and cannot drive. However, many people can drive using adaptive technology.

What’s wrong with the word “albino?”

While it is a commonly used term, it labels the person, and identifies them by their condition.