Albinism in Kenya
In a society once influenced by the belief of witchcraft, albinism in Kenya has received mixed reactions from the community. People living with albinism are often the object of scorn, hatred, discrimination and even trafficking (for ritualistic purposes). In recent years, however, these individuals are receiving a warmer reception as more people understand albinism. The albinism Society of Kenya is a non-governmental body responsible for creating awareness about albinism and advocating for the rights of albinos as a group of persons with disability. The organization was formed in 2006 and is currently headed by the nominated senator Isaac Mwaura who is also the founder of the body. The organization also supports children with albinism by helping them purchase sunscreen and pay for tuition.
Albinism is a group of genetic disorders characterized by little to no melanin. The disorder occurs due to the inheritance of a recessive gene, gene mutation affecting melanocytes (cells responsible for the production of melanin). The condition is present in people whose parents are albinos or those who carry the gene for albinism. Albinism occurs in two major types
- Oculocutaneous albinism
Oculocutaneous albinism occurs because of mutation in four genes leading to four subtypes of albinism OCA type 1 to 4. OCA type 2 is the most common in Kenya and is characterized by yellow hair, blue-grey eyes, and white skin.
Ocular albinism occurs mostly in males and affects mainly the eyes with the skin and hair having normal color or a lighter variation. The albinism results from a mutation on the X chromosome and affects mostly men.
Symptoms of albinism include
- Hair, skin or eyes whose color is lighter than normal (hair color may be white, yellow, reddish or brown)
- Absence of color on patches of skin, and
- Absence of color on skin, eyes, and hair
Albinism is most apparent due to the coloration of the skin. Genetic testing also helps in accurately determining the presence of defective genes. Other methods of testing albinism include an analysis of the symptoms and electroretinogram test. An electroretinogram test is used to determine the response of light-sensitive eye cells.
People with albinism face a unique set of challenges social, emotional and health challenges. Some of the health challenges include visual and skin problems.
Due to their lack of or reduced melanin, people with albinism may suffer visual problems such as photophobia (light sensitivity), involuntary eye movements, impaired vision, blindness, astigmatism, and crossed eyes. To protect their eyes, people with albinism may pursue options such as using prescription glasses, surgery of the eye muscles, wearing sunglasses.
In some individuals, exposure to the sun and increase in melanin with age may result in the darkening of the skin, moles, lentigines, and freckles.
Albinism is not a preventable condition since it affects the genetic composition of the individuals. However, those with the condition can manage it through using protective glasses for their eyes, sunscreen, hats and wearing clothes that cover them from too much exposure to sunlight and limiting the number of outdoor activities.
People with albinism also experience isolation and stigmatization from some family members and the society due to their apparent differences. Some may find the term ‘albino’ to be degrading. Due to the stigma and health complications associated with albinism, those with the condition may develop a low self-esteem. It, therefore, is important for parents, and the entire society to embrace people with albinism and encourage them to pursue goals without being held back by their condition.