Anthropology: A Look Into the Lives of Albinos in Africa

We have to ask ourselves what it means when a person is an Albino, before we start. Albinism, also called achromasia, is a group of inherited disorders characterized by little or no melanin production. We have all seen people with this disorder,but do we really know what really happens to them behind closed doors? How much danger is an Albino’s life in, in certain parts of the world? Albinos in Tanzania live in fear of witch doctors who prize their body parts. This is just the beginning of the silent killing of Albinos in Africa. A sad but true reality. Albinism is from the Latin albus, meaning “white”.

Albinism in detail

Simply put, albinism is when the skin, hair and eyes lack melanin. The pigment that gives the skin its colour and helps to protect it from damage by ultraviolet light from the Sun. It is a genetic disorder inherited from parents, who both carry a faulty gene. Preventing the skin from making melanin properly. People treat them as less of a human.  This condition increases the risk of skin cancer or it can lead to eye damage. The Albinism groups say more than 90% of people with the condition in Africa die before they reach 40-years-old.

Albinism is estimated to affect 1 in 1, 400 people in Africa. People that live with albinism are found in every country. In the US, one in twenty thousand people has albinism. While the figure is generally believed to be one in 1,400 in Tanzania, and one in 5,000 to 15,000 in other sub-regions of Africa. According to the BBC, which acknowledges a lack of full-scale studies of the albino population.

Vision for achromasia

A common myth is that people with albinism have red eyes. Although lighting conditions do  allow for us to see the blood vessels at the back of the eye. It can cause the eyes to look reddish or violet. Most people with albinism have blue eyes, and some have hazel or brown eyes. There are different types of albinism and the amount of pigment in the eyes varies. However, vision problems are in partnership with albinism.

People with albinism have vision problems that are not correctable with eyeglasses, and many have low vision. It’s the abnormal development of the retina. Abnormal patterns of nerve connections between the eye and the brain cause vision problems. The presence of these eye problems defines the diagnosis of albinism.

The degree of impairment varies with the different types of albinism. Although people with albinism may be known for being “legally blind”. With a corrected visual acuity of 20/200 or worse. Most learn to use their vision in a variety of ways and are able to perform innumerable activities, such as reading, riding a bike or fishing. Some have sufficient vision to drive a car.

Types of Albinos

While most people with albinism have very light skin and hair. Levels of pigmentation can vary depending on one’s type of albinism. Oculocutaneous (pronounced ock-you-low-kew-TAIN-ee-us) albinism (OCA) involves the eyes, hair and skin. Ocular albinism (OA), which is much less common, involves only the eyes. While skin and hair may appear similar or slightly lighter than that of other family members.

Over the years, researchers have used various systems for classifying oculocutaneous albinism. In general, these systems contrast types of albinism having almost no pigmentation. With types having slight pigmentation. The less melanin types of albinism include  hair and skin which are cream-colored. Vision is often in the range of 20/200. Other types with slight pigmentation, hair appears more yellow or has a reddish tinge and vision may be better. DNA tests can determine the precise type of albinism. Research on albinism genes is ongoing..

Types of albinism defined

Currently, there are seven different oculocutaneous albinisms that are now recognized as

• OCA1 – tyrosinase-related albinism results from a genetic defect in an enzyme called tyrosinase.There are two subtypes of OCA1. In OCA1A, the enzyme is inactive and no melanin is produced. Leading to white hair and very light skin. In OCA1B, the enzyme is minimally active and a small amount of melanin is produced. Leading to hair that may darken to blond, yellow/orange or even light brown, as well as slightly more pigment in the skin.
• OCA2 –  P gene albinism results from a genetic defect in the P protein that helps the tyrosinase enzyme to function. People with OCA2 have a minimal amount of melanin pigment and can have a hair color ranging from very light blond to brown.
• OCA3 – rarely described and results from a genetic defect in TYRP1. A protein related to tyrosinase. People with OCA3 can have substantial pigment.

• OCA4 – results from a genetic defect in the SLC45A2 protein that helps the tyrosinase enzyme to function. People with OCA4 have a minimal amount of melanin pigment similar to people with OCA2.
• OCA5 to7 – were recognized in humans in 2012 and 2013. They have reported mutations in three additional causative genes. As gene testing becomes available, more people with these types of albinism are identified. The complete range of physical manifestations will be recognized, and may overlap with other known types of OCA. Currently, these types of albinism are considered to be uncommon.

Some are further divided into subtypes, like OCA1.

Signs and Symptoms

Please remember albinism is since you were born, not after.

• Pale skin
• Back and forth movement of the eye
• A lazy eye
• Eyes are sensitive to light.
• Eyes that are pink, light blue, green, gray, or light brown
• Hair that is very light blonde , brown or reddish

Social issues at the cost of being an Albino

Imagine someone chose you last. Having little to no friends in school. People do not end up including you in any activities. Feeling alone. It is a horrible thing to go through in life, especially at a young age. Unfortunately, albinos have to go through this without a saying. Many people with albinism are at risk of being isolated because the condition is often misunderstood. Social stigmatization can occur, especially within communities of color. The race or fatherhood of a person with albinism may be questioned. Families and schools must make an effort to include children with albinism in group activities. Contact with others with albinism or who have albinism in their families or communities is most helpful.

The Albino Slayings

The condition is often a source of ridicule, discrimination, or even fear and violence. It is especially socially condemned  in many African societies. A study conducted in Nigeria on albino children stated that “they experienced alienation, avoided social interactions and were less emotionally stable. Furthermore, affected individuals were less likely to complete schooling, find employment, and find partners”. Many cultures around the world have developed beliefs regarding people with albinism.

Having achromasia makes one valuable in parts of Eastern and Southern Africa. Once, albinos used to seek shelter from the sun. Now they have gone into hiding simply to survive, after a series of killings linked to witchcraft. Like elephants and rhinos. People without albinism can hunt and kill the albinos for their body parts. Which can get you thousands of dollars. Albinos are often human trafficked across borders. This sounds all too familiar, but with animals instead. Killing people with albinism is common in places like Tanzania, Malwai and Mozambique.

Tanzania

People in the community did not have a proper education, due to the poverty found in these areas. Finding ways to make money. Only having hope in traditional healers and believing in superstition. Body parts are used in witchcraft rituals. Due to the superstition that the bones can bring riches, success, power and sexual conquests. Children are the most vulnerable. Albino hunters sell an entire human corpse for up to $75,000, while an arm or a leg could fetch about $2,000. What a world we live in

The killings have also spread to neighbouring Burundi, where at least 12 people have been killed. The victims were mutilated and their body parts are believed to have been sold in Tanzania to make potions.One man was sentenced to death and eight others were sent to prison in Burundi. Another harmful and false belief is that sex with an albinistic woman will cure a man with HIV. This has led, for example in Zimbabwe, to rapes (and subsequent HIV infection).

How Albinism affects kids

Children with albinism experience a great deal of bullying because of how they look. This often leads to them feeling unattractive and not included. Their self-esteem is probably very low. With the help of parents, students and teachers help create a custom educational plan. Like a larger print size, better classroom seating and computers for children that suffer with their vision.

Being part of a support group, can help kids with albinism with their emotional health. It is important for children’s peers to realize that being an albino is a part of who they are. Even though their skin color is different and might need some extra attention, they are just like everyone else. Children with albinism have a normal range of intelligence and life expectancy. But it is important to make them know they fit in.

The suncare sunscreen for Albinos

Kilimanjaro Suncare, or “Kilisun”. It is a sunscreen that was specially created for people with albinism. However, getting it to the right people and encouraging them to use it is far from straightforward. People with albinism need to apply two milligrams per square inch of skin, twice a day. That’s like a “tequila shot” of sunscreen for the exposed part of the body. It helped 25 children when the sunscreen came out in 2012. Now you can get it for free at clinics which take place every four months. Over half of those receiving the cream are children. Helping 2,800 people.

There are very few health services in Africa to manage albinism. Many of those living with the condition cannot afford the very much needed sunscreen and protective clothing. For example, a bottle of sunscreen that lasts for two weeks sells for about $15 in Tanzania, a country where most people live on less than $1.50 a day.

Other treatments

• Wear a hat
• Avoid tanning beds
• Try and stay in the shade as much as possible
• Only wear clothing with SPF protection
• Wear a broad spectrum sunscreen with atleast SPF 30 when going outside and reapply every 2 hours.
• Check their skin changes for susp
• suspicious marks.

• See a dermatologist every 6 to 12 months for a skin check
• Avoid medication that makes them more sensitive to the sun.

Ending the Persecution

Governments and other organisations are already taking action. Under the Same Sun (UTSS). A non-governmental organization with offices in Tanzania and Canada. They are distributing educational materials in Tanzanian schools that dispel the myths surrounding albinism. As well as setting up hotlines for those that feel unsafe. To raise awareness of albinos’ plight, the UN named 13 June each year as International Albinism Awareness Day. Every September is Albinism Awareness Month in South Africa. It may seem like not much action is taking place. But when people play their small part. It makes a huge difference. So, instead of killing albinos ,they killed the concept of albinos not fitting in. If we are being honest, there will always be good and bad people in the world. The bad people will be the ones making us feel like we belong, but the truth is, we do belong.

Cultural Significance in Anthropology

Albino rights groups are hopeful.  And eager for people to understand albinism and accept those with the condition. Albinos are just like everyone else. They should not be treated differently. Society is so fixated on this concept of what really defines beauty and normalism. That we forget each person has their own definition of these two powerful words. When you see a person with achromasia next time, do not treat or look at them differently. Not one single soul should be treat others in an inhumane manner. Just to feed society’s ego. This is not a topic that is trending, but it is something the world must be made aware of. If the world did not know what was happening to the albino communities, then people would still be persecuting them. We may be cut differently, but we all bleed the same.

“To me, diversity is what makes humanity interesting and beautiful.”

By Justine Dingwall