These are the health problems that albinos have for having such white skin

Albinos suffer from serious health problems. Learn about the causes of their white skin and why they continue to be ridiculed and harassed by society.

Albino models have become popular in haute couture, but around the world, people with the condition face scorn, health problems and heavy attacks.

What is albinism and what are its causes?

The color of human skin, hair, and eyes is controlled by several genes that determine the amount and type of melanin an individual has.

An inherited genetic mutation can interfere with the process, causing little or no melanin, and increasing the risk of severe sunburn, skin ulcers, and skin cancer.

OCA-2 – the most common type, is due to a mutation that produces a greatly reduced amount of melanin.

How common is albinism?

Responsible for nearly half of the world's cases of albinism, OCA-2 is most widespread in sub-Saharan Africa.

It is 14 times more common in Tanzania than in North America and Europe. The Guna ethnic group, from Panama, has one of the highest rates of death.

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Why does the sun damage the skin of albinos?

Melanin is the main pigment of human skin and of all mammals. When sunlight hits the skin, melanin covers the nuclei of skin cells and absorbs harmful ultraviolet rays.

PROTECTIVE PIGMENT

Cells with branching projections, called melanocytes, produce melanin in melanosomes, vesicles that flow into surrounding cells to protect them.

Human skin has two types of melanin: eumelanin, which is black-brown in color, and pheomelanin, which is reddish-yellow in color. The mixture of these two varieties determines the color of the skin.

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Although melanocytes in skin with albinism produce melanosomes, they either lack melanin completely or contain less than usual.

Since albinism is a recessive genetic trait, when two albino people have children, the boys always have it.

Health and social problems of albinos

African-American Diandra Forrest was the first woman with albinism to sign a contract with a major modeling agency.

Part of her appeal lies in the distinctive color of her skin, her hair, and her eyes. However, like many other albinos, Forrest was ridiculed as a child, so she has used her spotlight to celebrate albinism and combat prejudice and childhood bullying.

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The problems of albinos in society

Emmanuel Festo, now 15 years old, has spent much of his childhood learning to live with what he lost one night when he was six years old.

Four men armed with machetes cut off most of his left arm, almost all the fingers of his right hand, part of his jaw and four front teeth, with the intention of selling all of it.

Known as Emma, ​​the boy is now an outstanding student at a private boarding school. Although he stutters, he is a healthy and strong boy, and he has friends.

Emma was born with albinism, a recessive genetic mutation that she inherited from her dark-skinned parents. His is ivory white; her hair, perfectly shaved, is light orange, and her vision is very bad.

People like him have always been feared and despised in sub-Saharan Africa, even by their own families.

Discrimination against albinos

Some witch doctors claim that their body parts, turned into potions, powders or amulets, can attract wealth and success.

There are detailed and gruesome records of this problem at Under the Same Sun, a non-profit organization that works to end discrimination against those with albinism.

Since the 1990s, at least 190 people have been killed and another 300 attacked in 27 African countries, most since 2008. Tanzania is the epicenter of this wave of crimes, which includes the desecration of graves.

Nearly a decade ago, when such attacks first came to widespread attention, Tanzanian officials rounded up many boys with albinism and, for their safety, sent them to rudimentary schools for blind and other disabled children.

Many still live there, in miserable conditions. Until 2012, Emma shared a bunk bed with three children in one of those government centers.

Emma tells me that she likes her new school near Mwanza, where she has a bunk bed of her own. When asked about the problems she faces today, she replies that the boys make fun of his broken teeth.

800 kilometers away, in Dar es Salaam, Tanzania's largest city, Mariamu Staford understands Emma's challenges.

The woman lost both her arms at the age of 25, but today she, at 33, runs a small store where she sells water and soft drinks.

A huge smile lights up her round face, her toenails are painted red and blue, and she dazzles her in her bright green dress, the sleeves of which hang over her sides.

Two of her attackers were released and one died before trial. When I ask about the fourth attacker—a neighbor—Stford closes his eyes and scrunches up her face as if she's about to cast a terrible curse.

She today depends on a young assistant who gives change to clients and a full-time caretaker, who cooks and feeds her, dresses and undresses her, and cleanses her in a way that most people would never want to need.

However, she is independent in other ways, as she reads her Bible using her tongue and chin to turn the pages. Emma and Staford, like other people with albinism, have little or no melanin, the pigment that gives color to skin, hair and eyes.

albino health problems

So they are vulnerable to sun damage that can cause cancer. Their problems are similar to those of other people born with albinism in the rest of the world: the pain of ridicule, poor vision and sensitivity to the sun.

But, in addition, he lives in a region where belief in spirits and enchantments, irregular education and endemic poverty are common, as well as a general misunderstanding regarding albinism.

albino advocates

Emma's safe school and Staford's caretaker are funded by Under the Same Sun, an organization subsidized by wealthy Canadian businessman Peter Ash. It is very likely that Ash is the main advocate for people with albinism.

He persuaded the United Nations to designate June 13 as World Albinism Awareness Day and appoint an expert to travel to Malawi and Mozambique, where attacks have increased last year.

Almost all of the organization's money is distributed from a gated and secure compound in Dar es Salaam.

Under the Same Sun pays for the education of some 320 children, who become professionals and seek to change stereotypes – and the future – of people with albinism in sub-Saharan Africa, where they have been perceived as a curse and a burden for centuries .

The team conducts seminars to raise awareness of this disorder, almost always in villages where albinos have been killed, attacked or even kidnapped, and have never reappeared.

Victims of the magical rituals of the waganga

In these out-of-the-way places, a variety of advisers, witch doctors, sorcerers or fortune-tellers, called waganga in Swahili, are consulted for problems ranging from illnesses to a dry cow or an indifferent wife.

Some people, desperate for success – work or politics – sometimes look for more powerful solutions; certain waganga insist that the magic they need thrives on their fair-skinned neighbors.

The hair, bones, genitals and thumbs of albinos are said to possess specific powers.

Dried, ground up and deposited in a bundle, or scattered at sea, bits of individuals born white on a dark-skinned continent can presumably fill a fishing net, reveal the presence of gold in a rocky mantle, or help politicians win votes.

On the rocky southern shore of Lake Victoria in Mwanza, men and boys lounge near 40-foot-long carved wooden sailboats.

Why do they use them in rituals?

Exactly how these body parts earned such a reputation is not known, but some scholars have traced their use as commodities to the early part of this century, when subsistence farmers realized greater opportunity—and also greater risk—in fishing or gold mining.

There is almost always a family member involved in the attacks. "Walking money" is a form of derision used against people with albinism.

Ash makes an analogy: "It's like if you had a sick dog in your yard and your neighbor said, 'I'll give you a million dollars to kill that dog.' This is how some parents see these children.

A witch doctor might pay $5,000 for a full arm and, say, the father gets $500 or $1,000. It's a lot of money."

The average annual income in Tanzania is around $3,000.

Since 2007, only 21 individuals have been convicted of murdering people with albinism and in only six cases have they been tried, reports Tanzanian prosecutor Beatrice Mpembo, who attributes this low figure to the lack of cooperation from relatives.

Ash adds that only 5% of individuals arrested are convicted. And one of the main instigators of this violence has never been named: the wealthy clients of the waganga.

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How old are albinos?

I met a 23-year-old bank clerk, reporter, lab technician, and actor who, in 2013, starred in the independent film "White Shadow," about a boy who is hunted for body parts.

Hamisi Bazili told me that his mother, who also suffered from albinism, died of skin cancer after the film was released. She was 44 years old. This is a very common fate for those with albinism in Africa.

Only recently have nonprofits started aggressively educating about the need to use sun protection, while also distributing free sunscreens – otherwise very scarce and expensive, priced up to $25 per tube– and wide-brimmed hats with neck covers.

In Dar es Salaam, I visit the Ocean Road Cancer Institute to meet with Jeff Luande, considered the country's leading expert on the types of skin cancer that affect people with albinism.

As recently as 1990, Luande discovered that only 12% of albinos in the metropolitan area lived to be 40 years old.

And the main killer was squamous cell cancer, which is easy to treat if detected early. We go to a room where six men, two of them with albinism, lie on their beds in street clothes.

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skin cancer in albinos

Saidi Iddi Magera carefully removes the gauze from her head, revealing a jagged, raw hole in her neck below her left ear; It's so big it could fit a child's fist.

Drops of blood fall on her clean khaki pants. Luande confides in me that it is a very advanced injury.

Magera has been bedridden for nine weeks, awaiting radiation treatment in an overcrowded team.

Across the room, Msuya Musa awaits a benefactor; he needs about $20 to go home after another treatment. Her cancer, already three years old, has consumed part of her left ear and has left red spots at the base of her neck.

"Now I try to fish at night," says Musa. Luande informs me that neither of these men – both in their forties – will live much longer.

Children sponsored by Under the Same Sun have learned how to use sunscreen and demonstrate it by applying it behind their ears and between their fingers. However, the sun is still your daily enemy.

Without dark glasses, bright light hurts their eyes, so they must close them to feel relief.

Ash's group distributes sunglasses at each stop on the tour, while other groups do vision tests and distribute free glasses – as they call them here – so students can read the boards.

In most parts of the world, people with albinism experience childhood bullying and school frustrations; but, in general, they have the possibility of finding work and love, and of forming a family.

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