I have a Google Alert set up to let me know whenever there's a news story posted containing the word "albinism." I get all kinds of stuff, most of which I don't pass along here because it has nothing to do with Hermansky-Pudlak Syndrome. This story also has nothing to do with HPS, however, it is so appauling that I wanted to bring it some attention. It's been all over the internet. I've seen it on dozens of blogs - thus it took me a while to track down the actual, credible, story.
This story appeared in the New York Times. There's also some video if you want to click through to the actual story at: http://www.nytimes.com/2008/06/08/world/africa/08albino.html?_r=1&sq=albinos&st=nyt&scp=1&pagewanted=all
This story will give you a little bit of perspective about living with albinism in the United States.
Albinos, Long Shunned, Face Threat in Tanzania
Guillaume Bonn for The New York Times
Men waited for help at the Tanzanian Albino Society office in Dar es Salaam. At least 19 albinos have been killed in Tanzania in the past year, victims of a growing trade in albino body parts.
By JEFFREY GETTLEMAN
Published: June 8, 2008
DAR ES SALAAM, Tanzania — Samuel Mluge steps outside his office and scans the sidewalk. His pale blue eyes dart back and forth, back and forth, trying to focus.
The sun used to be his main enemy, but now he has others.
Mr. Mluge is an albino, and in Tanzania now there is a price for his pinkish skin.
“I feel like I am being hunted,” he said.
Discrimination against albinos is a serious problem throughout sub-Saharan Africa, but recently in Tanzania it has taken a wicked twist: at least 19 albinos, including children, have been killed and mutilated in the past year, victims of what Tanzanian officials say is a growing criminal trade in albino body parts.
Many people in Tanzania — and across Africa, for that matter — believe albinos have magical powers. They stand out, often the lone white face in a black crowd, a result of a genetic condition that impairs normal skin pigmentation and strikes about 1 in 3,000 people here. Tanzanian officials say witch doctors are now marketing albino skin, bones and hair as ingredients in potions that are promised to make people rich.
As the threats have increased, the Tanzanian government has mobilized to protect its albino population, an already beleaguered group whose members are often shunned as outcasts and die of skin cancer before they reach 30.
Police officers are drawing up lists of albinos in every corner of the country to better look after them. Officers are escorting albino children to school. Tanzania’s president even sponsored an albino woman for a seat in Parliament to show that “we are with them in this,” said Salvator Rweyemamu, a Tanzanian government spokesman.
Mr. Rweyemamu said the rash of killings was anathema to what Tanzania had been striving toward; after years of failed socialist economic policies, the country is finally getting development, investment and change.
“This is serious because it continues some of the perceptions of Africa we’re trying to run away from,” he said.
But the killings go on. They have even spread to neighboring Kenya, where an albino woman was hacked to death in late May, with her eyes, tongue and breasts gouged out. Advocates for albinos have also said that witch doctors are selling albino skin in Congo.
The young are often the targets. In early May, Vumilia Makoye, 17, was eating dinner with her family in their hut in western Tanzania when two men showed up with long knives.
Vumilia was like many other Africans with albinism. She had dropped out of school because of severe near-sightedness, a common problem for albinos, whose eyes develop abnormally and who often have to hold things like books or cellphones two inches away to see them. She could not find a job because no one would hire her. She sold peanuts in the market, making $2 a week while her delicate skin was seared by the sun.
When Vumilia’s mother, Jeme, saw the men with knives, she tried to barricade the door of their hut. But the men overpowered her and burst in.
“They cut my daughter quickly,” she said, making hacking motions with her hands.
The men sawed off Vumilia’s legs above the knee and ran away with the stumps. Vumilia died.
Yusuph Malogo, who lives nearby, fears he may be next. He is also an albino and works by himself on a rice farm. He now carries a loud, silver whistle to blow for help.
“I’m on the run,” he said.
He is 26, but his skin is thick and leathery from sun damage, making him look 20 years older.
Many albinos in Tanzania are turning to the Tanzanian Albino Society for help. But the nonprofit advocacy group operates on less than $15,000 a year. That’s not enough for the sunscreen, hats and protective clothing that could save lives.
Mr. Mluge, 49, is the society’s general secretary. He grew up with children pelting him with chalk in class. He said he had learned to live with being constantly teased, pinched and laughed at.
“But we have never feared like we do today,” he said.
Al-Shaymaa J. Kwegyir, Tanzania’s new albino member of Parliament, said, “People think we’re lucky. That’s why they’re killing us. But we’re not lucky.”
She said it was a curse to be born in equatorial Africa, where the sun is unsparing, with little or no protective skin pigment. Albinism rates vary throughout the world; about 1 person in 20,000 is an albino in the United States.
It is no accident that the Tanzania Albino Society’s office is on the grounds of a cancer hospital. Many of its members are sick.
The smell of the wards is overpowering, a nose-stinging mix of burn salves and rotting flesh. Many of the albino patients are covered with scabs, sores, welts and burns.
One patient, Nasolo Kambi, sat on his bed, recovering from a recent round of chemotherapy for skin cancer. His arms were splattered with dark brown splotches, like ink stains on white paper.
“People say we can’t die,” he said, referring to a superstition that albinos simply vanish when they get older. “But we can.”
Police officials said the albino killings were worst in rural areas, where people tend to be less educated and more superstitious. They said that some fishermen even wove albino hairs in their nets because they believed they would catch more fish.
On the shores of Lake Victoria, in northern Tanzania, albinos are a touchy subject. When asked if they used albino hairs in their nets, a group of fishermen just stared at the sand.
One traditional healer, a young man in a striped shirt who looked more like a college student than a witch doctor, said: “Yeah, I’ve heard of it. But that’s not real witchcraft. It’s the work of con men.”
Police officials are at a loss to explain precisely why there is a wave of albino killings now. Commissioner Paul Chagonja said an influx of Nigerian movies, which play up witchcraft, might have something to do with it, along with rising food prices that were making people more desperate.
“These witch doctors have many strange beliefs,” he said. “There was a rumor not so long ago that if you use a bald head when fishing, you’ll get rich. There was another one that said if you spread blood on the ground in a mine, you’ll find gold. These rumors come and go. The problem is, the people who follow witch doctors don’t question them.”
Mr. Mluge said whispers swirled around him whenever he walked down the sidewalk.
“I hear people saying, ‘It’s a deal, it’s a deal. Let’s get him and make some money,’ ” he said.
At home, at least, he is not an oddity. His wife is an albino. So are all five of his children. Some have already had skin cancer, in their teens.
The night used to be theirs, a time when Mr. Mluge and his fair-skinned sons and daughters could stroll outside together without worrying about the sun.
Now they bolt themselves in, peering through bars.
Just two weeks ago, while Mr. Mluge’s children were sleeping, a car pulled up to their house and four men got out to look around.
“I’m worried,” he said. “They know we are here.”
Mr. Mluge said he tried to read the license plate. But he couldn’t make out the numbers, and the car drove off.