People with albinism face multiple forms of discrimination worldwide. Albinism is still profoundly misunderstood, socially and medically. The physical appearance of persons with albinism is often the object of erroneous beliefs and myths influenced by superstition, which foster their marginalization and social exclusion. This leads to various forms of stigma and discrimination.
In some communities, erroneous beliefs and myths, heavily influenced by superstition, put the security and lives of persons with albinism at constant risk. These beliefs and myths are centuries old and are present in cultural attitudes and practices around the world.
What is albinism?
Albinism is a rare group of genetic disorders that cause the skin, hair, or eyes to have little or no color. Albinism is also associated with vision problems.
The term albinism typically refers to oculocutaneous (ok-u-low-ku-TAY-nee-us) albinism (OCA) — a group of inherited disorders where there is little or no production of the pigment melanin. The type and amount of melanin your body produces determines the color of your skin, hair and eyes. Melanin also plays a role in the development of optic nerves, so people with albinism have vision problems.
Signs of albinism are usually apparent in a person’s skin, hair and eye color, but sometimes differences are slight. People with albinism are also sensitive to the effects of the sun, so they’re at increased risk of developing skin cancer.
Although there’s no cure for albinism, people with the disorder can take steps to protect their skin and eyes and maximize their vision.
Several genes provide instructions for making one of several proteins involved in the production of melanin. Melanin is produced by cells called melanocytes, which are found in your skin, hair and eyes.
Albinism is caused by a mutation in one of these genes. Different types of albinism can occur, based mainly on which gene mutation caused the disorder. The mutation may result in no melanin at all or a significantly reduced amount of melanin.
Who’s at risk for albinism?
Albinism is an inherited disorder that’s present at birth. Children are at risk of being born with albinism if they have parents with albinism, or parents who carry the gene for albinism.
People with albinism will have the following symptoms:
- an absence of color in the hair, skin, or eyes
- lighter than normal coloring of the hair, skin, or eyes
- patches of skin that have an absence of color
Albinism occurs with vision problems, which may include:
- strabismus (crossed eyes)
- photophobia (sensitivity to light)
- nystagmus (involuntary rapid eye movements)
- impaired vision or blindness
What are the treatments for albinism?
There’s no cure for albinism. However, treatment can relieve symptoms and prevent sun damage. Treatment may include:
- sunglasses to protect the eyes from the sun’s ultraviolet (UV) rays
- protective clothing and sunscreen to protect the skin from UV rays
- prescription eyeglasses to correct vision problems
- surgery on the muscles of the eyes to correct abnormal eye movements