September is Albinism Awareness Month. The aim is to provides information on albinism to make people more aware of what this condition is about and consider the human rights of people living with albinism.
Albinism, as it is widely known, is a genetic condition caused by a lack of melanin formation. Melanin is a pigment (produced by melanocyte) that protects the skin from ultraviolet light and helps it produce colour. Patients with albinism have a normal number of melanocytes in the epidermis and follicles, but the melanin pigment is totally or partially absent. People with albinism have different levels of melanin, which causes variations in skin tone, hair colour, and eye movements.
The disease begins at birth and lasts for the rest of a person’s life. This genetic disorder can be passed down from both parents and is difficult to prevent, particularly if both parents are unaware of their family history. Albinism is inherited in an autosomal recessive pattern-meaning both parents must have the gene for their children to be born with albinism. If both parents have albinism or bear the gene, their children have a 1 in 4 chance of being born with albinism, and 1 in 2 chances of carrying the gene. Children can be carriers of the gene without showing any features of albinism but can pass the gene to their own children.
Poverty, exposure to harsh sunlight, and a lack of access to adequate health care, especially in rural areas, can exacerbate these health issues. The total prevalence rate of albinism in Africa has been estimated to be 1 in 5000 people. The prevalence of albinism has risen so dramatically especially in rural areas, and it is thought to be linked to cultural customs, in which certain traditions marry their relatives.
Types of albinism:
- Oculocutaneous albinism, the most common type and it affects the skin, hair and eyes.
- Ocular albinism, rare and affect mainly the eyes.
Albinism is a genetic disorder that affects individuals of all social classes and countries worldwide, albeit at different prevalence rates. Albinism can predispose people to lifelong physical and health problems, such as vision impairment and ultraviolet skin damage, which can lead to skin cancer. Many albinos develop actinic keratosis or skin cancers before reaching the age of 30 years. The sequelae of skin cancer are among the leading causes of early death in albino patients. In those patients, skin cancer is invariably multiple and biologically aggressive in nature, although melanoma is rare. The cancer typically occurs on the head or neck, areas usually more exposed to solar radiation.
Given their high sensitivity to UV light, albinos need total sun protection and should undergo regular skin exams every six months or less. Clinical management include education of albinos and family members on the importance of preventing sun exposure and about methods to protect against UV radiation including using a broad-spectrum sunscreen and protective clothing.
Some myths or perceptions about people living with albinism:
- In some African countries, witchdoctors have spread the myth that individuals with albinism and their body parts have superpowers, and this can lead to violent assault and murder.
- Body parts of those with albinism are used in witchcraft-related rituals that typically involve them being made into charms (jewelry) that are believed to bring wealth and good luck.
- Attacks take different forms, such as forcibly shaving off hair, mutilation of fingers, limbs, ears and genitalia, and murder. In sum, otherness poses a significant societal risk for people with albinism.
- Fishermen use nets woven from albino hair believing these nets will catch more fish.
- Other dangerous misconceptions of albinism include the belief that the mother was impregnated by a white man, or that the devil replaced the child with an albino.
- Others may believe albinism is contagious. As a result of these beliefs, both the mother and the child are often marginalized.
- One particular damaging misconception is that albinism is due to a lack of sun. Albino children find themselves placed outside to become accustomed to the sun and adults with albinism are encouraged to work outdoors as frequently as possible, further increasing their risk of skin cancer.
- People with albinism are feared and viewed with suspicion, while simultaneously considered to have mystical powers.
- People actually have different concepts towards albinism. Some say it’s a curse, others say albinos are blessings, others say that when you sleep with an albino, you get wealthy, others (majority men and some few percentages of females) say that unprotected sex with an albino cures AIDS; others consider them spiritual persons. Some communities can even worship us. Therefore, different people have different perceptions towards the concept of albinism.
Medically Reviewed by Dr Mathobele