Enabling Education: Albinism

Enabling Education: Albinism

One of the ways in which Dis-Maties helps to enable change is to enable you to educate yourself on various disabilities, their causes and the forms it can take. Albinism is a condition which can affect a person’s life in many ways, cause disabilities such as visual impairment, and is often highly stigmatised. The only way in which to reduce stigma is to find out more about what causes it, and what it entails. This short article was written as an informative research piece on Albinism.

Albinism is a hereditary condition that can affect all vertebrates, including humans. An organism with a complete absence of melanin is referred to as an albino. The words “albinism” and “albino” are derived from the Latin word “albus”, meaning “white”. Two types of Albinism can be distinguished as Oculocutaneous Albinism and Ocular Albinism. People with Oculocutaneous Albinism (effecting the skin, hair and eyes) often appear white or very pale, because the pigments responsible for black, brown and yellow colorations are not present. Ocular Albinism (effecting only the eyes) results in the person’s eyes being of a very light blue colour and often requires genetic testing to diagnose. Albinism affects people from all ethnic backgrounds, but is most prevalent in people of sub-Saharan African descent.

Albinism is also a congenital condition (present before birth), characterised by the complete or partial absence of pigment in the skin, hair and eyes. This results from an absence or defect in a copper-containing enzyme called tyrosinase, which is involved in the production of the melanin pigment. This pigment’s main use is to absorb light and to protect skin cells from UVB damage and reduce the risk of cancer. People living with albinism therefore often have to take extra care in the protection of their skin. Albinism can also affect sight and can be the cause of complete or partial visual impairment. This is because melanin is important in the development of the optical system. A lack of pigment in the eye can cause great discomfort. Since pigment in the eye absorbs light and helps us tolerate most kinds of bright light, the lack of pigment in these structures makes individuals with albinism very sensitive to light, also called photosensitivity.

Visual impairment in people living with Albinism is one of the least considered problems experienced by those born without melanin. Some of the reasons a person with Albinism has visual impairment can also be attributed to underdeveloped fovea in the eye. The fovea centralis is the part of the retina responsible for much of our visual acuity. The fovea centralis (the term fovea comes from the Latin, meaning pit) is a small, central pit composed of closely packed cones in the eye. It is located in the center at the back of the retina. The fovea is responsible for sharp central vision (also called foveal vision), which is necessary in humans for activities where visual detail is of primary importance.

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{Biological Diagram of Eye showing Cornea, Pupil, Iris, Retina, Fovea and Optic Nerve}

Aside from the fact that people with albinism face challenges related to visual impairments and the need to be extra careful to avoid sunburn, a burden they share with other people living with disability is that of stigma, discrimination and even the threat of violence. Many cultures around the world hold false beliefs about people with albinism. According to the article “Albinism in Africa: Stigma, Slaughter and Awareness Campaigns by Andres E. Cruz-Inigo, et al.” The driving forces underlying crimes against people suffering from Albinism are ignorance, myth, and superstition, such as the belief that individuals with albinism possess superpowers or that their body parts bestow fortune and health. In some African countries, there has been a sharp rise in witchcraft-related killings of people with albinism for the purpose of using their body-parts in potions. In sub-Saharan Africa, there is also a belief that sleeping with an albino woman can cure AIDS. This belief has led to the rape of many albino women and subsequent HIV infection. Aside from the physical threats faced by people with albinism, they are often subjected to ridicule, because of their pale coloration.

Albinism does not define a person’s success though. Celebrities such as fashion models Connie Chiu and Shaun Ross stand out as challenges to the assumption held by some that very pale skin, eyes and hair is unattractive.

Have a look at these Models with Albinism who are taking the fashion world by storm: Jewell Jeffrey, Nastya Zhidkova, Thando Hopa, Refilwe Modiselle, Connie Chiu, Amal Sofi, Stephen Thompson, Alyona Subbotina, Albi X, Shaun Ross, Diandra Forrest, Dessyslava, Adama Dosso, Sir Maejor.

Sydney Berrington

Author: Sydney Berrington

Sydney Berrington was chair for Dis-Maties 2012 – 2014 and has a great passion for life and academics. She aims to raise awareness for those living with disabilities. She also loves good white wine, pizza and political debates.

Sydney Berrington

Sydney Berrington

Sydney Berrington was chair for Dis-Maties 2012 - 2014 and has a great passion for life and academics. She aims to raise awareness for those living with disabilities. She also loves good white wine, pizza and political debates.

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