Albinism

Understanding Albinism

Humans, animals, and even plants can have albinism, a condition that gives people a kind of pale appearance. But what is albinism and what causes it?

Albinism is a genetic condition where people are born without the usual pigment (color) in their bodies. Their bodies aren't able to make a normal amount of melanin, the chemical that is responsible for eye, skin, and hair color. So most people with albinism have very pale skin, hair, and eyes. Albinism can affect people of all races, and there are different kinds of albinism.

Some people with a condition called oculocutaneous albinism have extremely pale skin and eyes, and white hair. Others with this same type of albinism might have slightly more color in their hair, eyes, or skin.

For some people, albinism affects only their eyes. This is known as ocular albinism. People with ocular albinism usually have blue eyes. In some cases, the iris (the colored part of the eye) has very little color so a person's eyes might look pink or reddish. This is caused by the blood vessels inside the eye showing through the iris. In some forms of ocular albinism, the hearing nerves hearing may be affected and the person may develop hearing problems or deafness over time.

Except for eye problems, most people with albinism are just as healthy as anyone else. In very rare cases a person's albinism is part of another condition that involves other health problems in addition to albinism. People with these types of albinism can have such health complications as bleeding, lung, bowel, and immune system problems.

Eyesight and Albinism

People with albinism often have trouble with their eyesight. They may wear glasses or contact lenses to help correct problems like nearsightedness, farsightedness, or astigmatism. Others might need eye surgery. Just as there are different degrees of albinism there are also different levels of eye problems for a person who has the condition.

Albinism does not make a person completely blind. Although some people with albinism are "legally blind," that doesn't mean they have lost their vision completely. They can still read and study — they just may need larger print or magnifiers to help them.

People with albinism can be very sensitive to light because the iris doesn't have enough color to shield the retina properly. Wearing sunglasses or tinted contact lenses can help make them more comfortable out in the sun.

Skin Precautions

Besides giving skin, eyes, and hair their color, melanin helps protect our skin from the sun. It does this by causing skin to tan instead of burn — which is why people with darker skin (more melanin) are less likely to burn than people with lighter skin. So people with albinism can sunburn very easily.

People with light skin are also particularly at risk for skin cancer. So it's important for people with albinism to use a sunscreen with a high SPF factor at all times and to wear clothing that offers protection from the sun, such as hats, dark-colored clothing, or long pants and long-sleeved shirts.

What Causes Albinism?

Albinism is inherited. It's not contagious — you can't "catch" it from someone else. People are born with albinism because they inherit an albinism gene or genes from their parents.

In the most common forms of oculocutaneous albinism, both parents must carry the albinism gene for a child to be born with the condition. Even if both parents carry the gene, the chance of each of their children being born with albinism is one in four.

If just one parent has the gene and the other parent has a normal pigment gene, their children won't have oculocutaneous albinism. But each child will have a one in two chance of being a "carrier" of an albinism gene. If a child who carries the gene grows up to have a baby with someone who also does, there's a one in four chance that their baby may have albinism. Since most people who carry an albinism gene don't show any signs of the condition, a baby with albinism can be born to parents whose coloring is typical for people of their ethnic group.

The most common form of ocular albinism affects only males who have inherited an albinism gene from their mothers. Some females can have a milder form of the condition if they have inherited this gene.

How Is It Treated?

Because most people with albinism don't have health problems, treatment — apart from vision care — isn't usually necessary. But they do need to take certain precautions, such as wearing sunglasses and sunscreen when outdoors.

Albinism can't be "cured." But it only rarely leads to serious health problems. When health problems are serious, doctors usually can treat the symptoms.

What's Life Like for Teens With Albinism?

People with albinism are just like anyone else, with the same lifespan and ability to reach their goals. But living with any medical condition during the teen years can be difficult, and albinism is no exception.

Because the social scene can be more about fitting in than standing out, teens with albinism may face bullying or prejudice. Voicing any frustration or sadness to a family member or friend who understands can help. So can talking to a counselor or therapist to get ideas on coping with the challenges that come up during the teen years.