People with albinism in South Africa suffer from stigmatization.

International Albinism Awareness Day is commemorated on June 13. Albinism is manifested when various genetic defects make the body unable to produce melanin, a natural substance the body produces to color the skin, hair, and the iris of the eyes. This condition is genetically inherited and individuals with this condition are more vulnerable to skin cancer and several eye problems.

There are various types of albinism. The most severe being oculocutaneous albinism, individuals with this condition have white or pink hair, skin, and iris, and have serious eye problems. Ocular albinism type 1 (OA1) is other kind of albinism and affects exclusively the eyes; the eyes will lack pigmentation on the rear part (retina). Another kind of albinism is the Heřmanský–Pudlák Syndrome (HPS), caused by a change in a single gene and can come with a bleeding disorder and lung or intestinal pathologies.

In Africa, the prevalence of albinism is estimated to be around one in 5 thousand to one in 15 thousand, with one in 4 thousand individuals in South Africa, approximately. This condition most often occurs in black people. Because of facial characteristics and hair texture similar to that of Africans, it is related more with the black community than white people. This condition tends to be a subject of myths and stereotypes.

Goffman described the stigma as a deeply disparaging attribute and socially constructed on what society considers as deviated or different. Stigmatization of people with albinism is notable in South Africa. Individuals often face mocking, inquisitive, and sometimes well-intentioned questions, but still, ignorant to this condition. In some countries such as Kenya, individuals face threats to their integrity and safety as a result of beliefs and superstitions that prosper during economic hardship. They even are hunted for their body parts because some people believe they have supernatural or magic properties.

A pilot study conducted with two groups of South African University students, recruited through a non-probabilistic sample with the objective of investigating the attitudes towards albinism, showed that several participants lacked knowledge about albinism. This can be attributed to the fact that very few participants had any relatives or friends with albinism.

Individuals with albinism have higher difficulties to interact with strangers, albeit well treated by friends and family. All participants with albinism have experimented stigma and discrimination. Results indicate the use of labels, stereotypes, and a lack of knowledge about albinism, affecting dramatically the way people interact with people with albinism, also affecting the way people with albinism regard themselves and how they should present themselves to prove their worth.

It was also showed that participants with albinism tend to opt out from their communities to not be judged or discriminated against, having negative psychological consequences. This project is just an example of how necessary it is to spread knowledge about albinism and share doubt and regards about it.

A person with albinism will have the following symptoms:

  • Lack of color in hair, skin, and iris of the eye.
  • Lighter skin and hair.
  • Colorless skin patches.

Many types of albinism are associated with the following symptoms:

  • Crossed eyes.
  • Light sensitivity.
  • Uncontrollable and rapid eye movements.
  • Impaired vision or functional blindness.

Depending on the severity of the condition, pertinent treatments are used, lessening the symptoms. Generally, it includes protecting the skin and eyes from the sun with the following measures:

  • Reducing the risk of suffering sun burnings by avoiding the sun.
  • In case of sun exposure, cover the body with adequate clothes.
  • Use sunscreen products with high sun protection.
  • Use sunglasses with protection against UV radiation.

In response to the generalized disappearance and murder of people with albinism in several Oriental and Central Africa countries, in 2008, the United Nations officially declared people with albinism as “disabled people”, which calls to protect and promote the human rights of people with albinism.

Reviewers: Brenda Giselle Álvarez Rodríguez (Public Health and Research Unit) and Cassandra Saldaña Pineda (Knowledge Management Unit).

Sources:

Article: “Being black in a white skin: Beliefs and stereotypes around albinism at a South African university”. Afr J Disabil. 2015; 4(1): 106.

Article: “Children with albinism in African regions: their rights to ‘being’ and ‘doing’”. BMC Int Health Hum Rights. 2018; 18: 2.

MedlinePlus