Dr Thapelo Motshudi
9 June 2023
7 min read

Albinism Awareness Day is held annually on the 13th of June. It is a day dedicated to raising awareness about albinism, a genetic condition characterised by a lack of pigment in the skin, hair, and eyes. This global initiative aims to promote understanding, acceptance, and inclusivity for individuals with albinism, as well as raise awareness about the challenges they face.

What is albinism?

Albinism is a group of disorders passed down in families in which the body makes little or none of a substance called melanin. The type and amount of melanin in your body determine the colour of one’s skin, hair, and eyes. As a result of melanin playing a role in the development and function of the eyes people with albinism have vision problems. The condition is found in both sexes regardless of ethnicity in all countries of the world. 

Collectively these conditions are called oculocutaneous albinism (OCA). Symptoms of albinism are usually seen in a person's skin, hair, and eye colour. People with albinism are also sensitive to the effects of the sun, so they're at higher risk of getting skin cancer. Although there's no cure for albinism, people with the disorder can take steps to protect their skin and eyes and get proper eye and skin care.

What causes it?

Several genes give instructions for making one of several proteins involved in producing melanin. Melanin is made by cells called melanocytes that are found in your skin, hair, and eyes. Albinism is caused by a change in one of these genes. Different types of albinism can occur, based mainly on which gene change caused the disorder. The gene change may result in no melanin at all or a significant decrease in the amount of melanin.

  • Oculocutaneous albinism (OCA) – this is the most common type, and it causes decreased pigment in the skin, hair, and eyes, as well as vision problems.
  • Ocular albinism is mainly limited to the eyes, causing vision problems, and it usually occurs only in males. It's much less common than OCA.
  • Albinism related to rare hereditary syndromes.

What are the symptoms?

Depending on one’s race, people with albinism may have skin that is light brown, red-brown, and have freckles. Others have very light-coloured skin and hair compared with siblings or other blood relatives. For some people, skin colour may be nearly the same as that of parents or siblings without albinism. However, skin colouring, also called pigmentation, and hair colour, can range from white to brown.

With exposure to the sun, some people may develop moles, large freckle-like spots, sunburn, and no ability to tan. For some people with albinism, skin colouring never changes. For others, melanin production may begin or increase during childhood and the teen years, resulting in slight changes in colour. Affected individuals may have crossed, rapid eye movements, and sensitivity to light.

How is it diagnosed?

Diagnosis of albinism is based on:

  • A physical exam that includes checking the skin and hair pigmentation.
  • A thorough eye exam.
  • Comparison of the child's pigmentation to that of other family members.
  • Review of the child's medical history, including whether there has been bleeding that doesn't stop, frequent or large bruises, or unexpected infections.

Genetic testing can help determine the type of albinism and the risk of passing down the gene change to children.

How is albinism managed?

  • Use low vision aids, such as a hand-held magnifying glass, a telescope, or a magnifier that attaches to glasses.
  • Always use sunscreen with a sun protection factor (SPF) of 30 or greater that protects against both UVA and UVB light.
  • Strictly avoid high-risk or lengthy sun exposure. Examples include being outside for long periods or in the middle of the day, at high altitudes, on or near water, and on sunny days with thin cloud cover.
  • Wear protective clothing, including clothes with colour. Examples include long-sleeve, collared shirts, long pants, and socks; broad-brimmed hats; and special UV-protection clothing.
  • Protect eyes by wearing dark, UV-blocking sunglasses. Another option is transition lenses called photochromic lenses, which darken in bright light. Corrected eyes may sometimes be correctable by an ophthalmic surgeon.

What are the complications?

Problems with vision can impact learning, employment, and the ability to drive. People with albinism have skin that is very sensitive to light and sun. Sunburn is one of the most serious complications of albinism, and it can result in rough and thickened skin. In addition, it can increase the risk of developing skin cancer.

Because of the lack of skin pigment, a type of skin cancer called melanoma may appear as pink or red growths or moles, rather than the usual black or brown colour. This can make skin cancer harder to identify at an early stage. Without careful and regular skin exams, melanoma may not be diagnosed until it's advanced.

Some people with albinism may experience discrimination, bullying, teasing, or unwanted questions about their appearance, eyewear, or visual aid tools. They may look different from members of their own families or ethnic groups, so they may feel like outsiders or be treated like outsiders. These experiences may cause social isolation, poor self-esteem, and stress. Persons with albinism face more severe forms of discrimination and violence in regions where the majority of the general population are relatively dark-skinned. In other words, a greater degree of contrast in pigmentation often gives rise to a greater degree of discrimination.          

Albinism cannot be prevented because it is an inherited condition. Affected individuals need to remain vigilant and consult a healthcare provider if symptoms worsen.

Talking to a mental health expert or others who live with the condition may help. Support groups can offer emotional support and practical tips, like the Albinism Society of South Africa.

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