Tropical sun is deadly foe for albinos of Panama’s ethnic Kuna

McClatchy NewspapersJuly 30, 2012 

— In an 11th-grade classroom on this tropical island, the students have the deeply bronzed skin and black hair typical of ethnic Kuna people.

That is, all except one: Mayli Gonzalez looks like she’s from a Nordic realm. Her hair is blondish white and her skin is as fair as cream.

The 16-year-old girl is an albino, and she is not unique among the Kuna, a band of indigenous people who live in Panama and Colombia, with the largest population in the San Blas Islands off the Panamanian coast. Indeed, demographic experts say Kuna have what is perhaps the highest rate of albino births on Earth. Albinos dwell in nearly every village. Over past centuries, they have oscillated between esteemed social status and rejection.

Social scientists say there is one albino born for every 145 Kuna Indian births, a rate higher than in parts of sub-Saharan Africa where albinos also are numerous, and far above the global average of somewhere around one in 20,000 births.

Albinism is an inherited condition characterized by a complete or partial lack of pigment in the skin. Albinos occur in all races and can be of either gender. They are highly susceptible to skin cancer and eye disorders caused by exposure to the sun’s ultraviolet rays.

So it is perhaps a cruel twist of genetic fate that so many albinos dwell under a harsh tropical sun on these coral-ringed islands. “They start having skin problems at a very early age,” said Dr. Gioconda Gaudiano, a dermatologist in Panama City who travels frequently to the Kuna region to treat albinos, some of whom die at a young age. “By tradition, they don’t look for help.”

About 50,000 Kuna people live in three autonomously governed areas off Panama’s northeast coast, mostly on islands away from the jungle-covered mainland. Kuna women are widely known for their daily use of colorful blouses made from molas, or applique textiles created with quilted geometric patterns.

The Kuna traditionally survive by farming plantains and coconuts, and fishing – outdoor pursuits that expose them to the sun.

“It’s impossible to stay inside,” Gaudiano said. “They really need to go fishing and they need to go farming.”

Sitting under an open-air hut covered with palm fronds, the community leader, or saila, Maximiliano Ferrer, explained that albinism is understood far better than it once was.

“People know that you have to take care of yourself with a hat, long-sleeve shirts and (dark) glasses,” said Ferrer, who is an albino. His left ear lobe sported a broad bandage, the result of his latest treatment for a skin lesion.

Ferrer noted that Kuna mythology treats albinos as a special race that would rescue people from disaster, especially during lunar eclipses, when they would climb to rooftops to frighten away a jaguar or dragon believed to be devouring the moon.

“We have this idea that with eclipses and hurricanes, the albinos are the ones who can save people,” Ferrer said.

The mythology gave rise to the term “children of the moon” for albinos.

“People say, ‘Oh, they are the moon children. They’ve always been accepted and held in this higher position.’ But that’s not really the case,” said Kelly Allen, a researcher of albinism who is in Panama on a Fulbright scholarship.

Christopher Columbus arrived in Panama in 1502, and conquering Spaniards left a trail of mixed-race children. For centuries, that spelt doom for albino Kuna.

“When a child was born who was very light-skinned, they thought it was a child of a Spaniard, so they’d be killed at birth,” Allen said.

In a curious turn of history, U.S. adventurer Richard Marsh took several albino Kuna to Washington to be studied in the early 1920s. He believed the Kuna were a “white” race descended from errant Vikings who arrived in the Americas long before Columbus. Marsh sought U.S. protection for all Kuna, leading to U.S. pressure on the Panamanian government to set up the current autonomous Kuna governing structure after a 1925 uprising by the restive ethnic group. At the time, the U.S. dominated Panama through its occupation of the Canal Zone.

Geneticists later determined that a gene on a strand of DNA known as Chromosome 15 caused the type of albinism common among the Kuna, which gives only minimal pigmentation in skin and hair. Rather than pink eyes common in albinos with no pigmentation, the Kuna albinos have blue or brown eyes.

In some countries of Africa, albinos suffer deadly discrimination. In 2007, as an economic ploy and feeding off superstition, witchdoctors in Tanzania said potions made from the blood, skin and bones of albinos could bring wealth and luck, leading to reports of at least 68 attacks on albinos, many fatal.

“In Uganda, people are very much afraid of the condition,” said Allen, who studied there for four months. “They think that they are a curse on the family.”

Today, the albinos of Guna Yala (the name of the autonomous region of the Kuna, who are also called Guna) are generally viewed as gifted in the arts, religion and in academic pursuits, including law. Marden Paniza is a prominent Kuna albino jazz musician in Panama.

“They are very dynamic. A lot of them are leaders,” said Leonardo Quintero, a schoolteacher in Nargana, a compact island village of 2,000 Kuna.

“My father-in-law was an albino. He played every instrument imaginable. He had three wives. He played the women as well as the instruments,” said Ismelda Rojas, a teacher on neighboring Isla del Tigre, to the laughter of fellow teachers.

The local shaman on her island is an albino.

“He has knowledge of everything,” said Yamileth Wilfred, a fellow teacher. “He makes potions and cacao immersions with herbs and things.”

Knowledge has spread of the perils that albinos face from the tropical sun, but many still do not take adequate precautions.

“I’ve never seen them put on hats or dark glasses,” said Nemesio Solano, a physical education teacher, speaking of the three albino students at the Felix E. Oller High School in Nargana. “Maybe their mothers put sun block on them. But I don’t demand it of them.”

Like most of the Kuna albinos, Mayli Gonzalez, the high school student, suffers from involuntary lateral eye twitching, or nystagmus. Still, she blends easily with other students. “We are all equal,” she said.

Many late afternoons, when the sun falls lower in the sky, she joins friends in outdoor games of volleyball.

In an office in her Panama City apartment, Gaudiano, the dermatologist, scrolled through scores of photos on her iPad of Kuna albinos she has treated, most displaying pre-cancerous or cancerous lesions on the lips, face and torso, some of them disfiguring and lethal.

“Can you imagine? On a tropical island with this skin type?” she said, looking at a photo of a young Kuna albino who looked twice her age and faced an early death.

Treatment at clinics on the islands can be difficult. “Sometimes they don’t even have electricity,” she said, scrolling through further photos.

“Look how they close their eyes. They cannot tolerate the sun. But kids are kids. It’s difficult to be inside,” she said.

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