How common is albinism and what genes cause it?

explainer

International Albinism Awareness Day aims to promote better understanding of albinism and combat discrimination against people with albinism.

Albinism is a rare genetic condition that results in a lack of pigmentation (melanin) that normally gives color to hair, skin and eyes.

People with albinism usually experience sensitivity to bright light, which can lead to blindness and skin cancer. Additionally, in some countries, people with albinism face discrimination, violence, and even death.

To promote better understanding of albinism and to combat discrimination against people with albinism, the United Nations has designated June 13 as International Albinism Awareness Day.

What causes albinism?

Albinism is caused by mutations in specific genes responsible for melanin production. This gene is recessive, meaning that both parents must carry the gene to pass it on. Albinism is not a disease, but a genetic condition that people are born with.

There are different types of albinism and the degree of pigmentation varies depending on the specific type.

According to the United Nations, people with albinism have a high risk of skin cancer, which accounts for at least 80 percent of deaths. This risk is so significant that 98 percent of people with albinism do not survive beyond the age of 40.

Although there is no cure for the absence of melanin central to albinism, the condition can be controlled by avoiding direct sunlight, wearing high-quality sunglasses that block UV rays, and wearing sun-protective clothing and hats when outdoors.

How common is albinism?

Although albinism is generally uncommon, some forms of the condition are extremely rare.

Albinism occurs worldwide regardless of race or gender. Although reliable data are not available for many parts of the world, it is estimated that one in every 17,000 to 20,000 people in North America and Europe has some form of albinism.

Albinism is most prevalent in sub-Saharan Africa and is estimated to be between one in 5,000 and one in 15,000.

What are the preferred terms?

The term “albino” has historically been used in a derogatory way, so “person with albinism” is preferred when referring to those with the condition. “Albino” defines a person by their appearance, while “person with albinism” puts the person before the condition.