Fighting the Stigma of Albinism

"Despite the proof of its prevalence, there is some kind of unanimous censorship exerted over the discussion of albinism in Aicuña," writes Dr. Eduardo Castilla, who studied the genetic structure of Aicuña. "The world albino is rarely spoken aloud, as if it were a taboo, one of those dark family secrets that can be ignored if no one speaks of it."

So, too, discovered photographer Guidotti in 1997, when his encounter with the stunning 13-year-old motivated him to highlight the beauty of albinism in his own work. Frustrated with public perceptions, he contacted the National Organization for Albinism and Hypopigmentation (NOAH).

"At first, they told me to get lost," he said. "They thought I was a little crazy because I was so excited and so upset with what I saw. There was the fear of exploitation. Every time there is a story about albinism, they are a victim."

After some persuading, NOAH has embraced Guidotti's concept and used his photography to portray "the world of beauty in albinism" as a way to fight stereotyping. Today, Guidotti's nonprofit organization -- The Positive Exposure -- is devoted to that goal.

Indeed, NOAH president Michael McGovern said his organization, which focuses on education and research, struggles to get out accurate information.

"People may go through their whole life and not encounter a person with albinism," he told "They can be as unreal or as fictitious to them as a unicorn."

Just this week, Samwel Mluge, secretary general of the Tanzanian Albino Association, attended NOAH's annual conference in Las Vegas, where participants will seek to create a world alliance in the fight against stereotypes.

Guidotti's imagery has been the centerpiece of much of that effort.

"We will solidify a lot of other organizations," Guidotti said. "It will be the mothership of all groups worldwide. In higher numbers we are more powerful. I don't have albinism but I feel a part of that community."

The organization has been particularly concerned about negative images of albinism in Hollywood and sought, unsuccessfully, to encourage director Ron Howard to remove the murderous albino monk from the 2006 film "The Da Vinci Code."

The caricature of the "evil albino" has become a "silver screen staple," according to the Web site Skinema. From Chevy Chase's sinister sniper in the 1978 film "Foul Play" to nasty characters in "Matrix Reloaded" and "Princess Bride," albinism is portrayed in a dark light.

The site, run by San Francisco dermatologist Dr. Vail Reese, claims that two dozen blood-thirsty characters have appeared in movies from 2000 to 2003.

"We're not saying that they're not ever going to be bad but just once it should be a good guy," said McGowan, who knows first-hand the pain of stereotypes.

One of seven children, McGowan was born with albinism. Neither of his parents nor his siblings had the trait. Because it is an autosomal recessive condition, families can be "carriers" yet not outwardly display its traits. Two carriers have a one in four chance of having a child with albinism, which is rooted in the latin word meaning white.

Albinism is a "genetic dice game," according to McGowan, now 50. Nearly all experience uncorrectable low vision and in some cases Hermansky-Pudlak Syndrome, a sometimes fatal condition that causes bleeding, colitis and, in the most severe cases, pulmonary fibrosis.

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