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'It's hard being white': Indonesia's albino village

Posted by On 7:50 PM

'It's hard being white': Indonesia's albino village

Email 'It's hard being white': Indonesia's albino village

Updated April 22, 2018 09:22:44

Nana Suryana and his family, Indonesia. Photo: Nana Suryana and his family. (ABC News: Phil Hemingway) Map: Indonesia

The isolated western Java village of Ciburuy has possibly one of the highest rates of albinism in Indonesia, and nobody seems to know why.

Nana Suryana always knew he had albino ancestors. His great-grandfather was a "white man" and his family has lived in the same village of Ciburuy, in western Java, for centuries.

"We've been here for 149 generations. My family is famous for having the white gene," he says.

What he did not know when he married Siti Rohma was that she too carried a gene for albinism.

When their daughter Dewi Rasmana was born â€" with white hair and skin, and pale blue eyes â€" both parents assumed her albinism came from her father's side of the family.

Usman Lukmanul Hakim 3.jpg Dewi Rasmana says her eyesight is worsening as she gets older. Photo: Dewi Rasmana says her eyesight is worsening as she gets older. (A BC News: Phil Hemingway)

But in fact, for a child to be albino, both parents must carry a gene â€" and any child born to such parents will have a one-in-four chance of albinism even when both parents have normal pigmentation.

Sure enough, Nana Suryana and Siti Rohma's youngest child, two-year-old Jajang Gunawan, is also albino. A third child who died at birth was not.

But what makes the village of Ciburuy so remarkable is that it is not just one or two families that carry an albino gene.

There are clearly many more "carriers" in this small village than for the average population.

Ciburuy village in western Java. Photo: Ciburuy village in western Java. (ABC News: Phil Hemingway)

Nana Suryana's brother Amas Masadi â€" who like him has normal pigmentation â€" also has two albino children, Rosanah and Usman Lukman Nulhakim, which means that both brothers have married women from separate families who also carry a gene.

'Sometimes it's hard being white'

Ciburuy has possibly one of the highest rates of albinism in Indonesia, and nobody seems to know why.

Although, as a relatively isolated village, it is likely the population at Ciburuy has remained more "genetically intact" than other villages or towns that have seen more migration and assimilation into the broader population.

Nana Suryana says when he was a child his father told him that centuries ago a foreign man with white skin came to Ciburuy and touched a pregnant woman on the belly.

Jajang Gunawan in the village. Photo: Jajang Gunawan in the village. (ABC News: Phil Hemingway)

When she gave birth, the child was white-haired and white-skinned. Since then, every few generations, more white-skinned children have followed.

Today albinos at Ciburuy are known as Walanda Sunda, or Sundanese white people.

Like those with albinism anywhere, the Walanda Sunda at Ciburuy have extreme sensitivity to the sun because of the lack of melanin in their skin, and a correspondingly high risk of skin cancer.

They also have poor eyesight, verging on blindness for some.

Albinos at Ciburuy are known as Walanda Sunda, or Sundanese white people. Photo: Albinos at Ciburuy are known as Walanda Sunda, or Sundanese white people. (ABC News: Phil Hemingway)

The social stigma of being and looking different, particularly in a culture where skin tone is universally darker, has also exposed many to teasing or bullying.

Nana Suryana's niece Rosanah, now 20, says she had to leave school early because she was bullied by classmates over her white skin.

She can't find work because she didn't finish school, and works mostly at home. She now doesn't know if she wants to get married and have children of her own, because of the fear that they too may have the condition.

"Sometimes it's hard being white. I was often teased at school. I was often upset because of it," she says.

Rosanah says she had to leave school early because she was bullied by classmates. Photo: Rosanah says she had to leave school early because she was bullied by classmates. (ABC News: Phil Hemingway)

'I'm proud of my dad because he's unique'

Nana Suryana's 14-year-old daughter Dewi Rasmana has had an easier time. She is still at school and says she has had little experience of being teased for being different â€" though she regularly has to cover up against the sun, and her eyesight is worsening as she gets older.

A couple of streets away, 40-year-old Suryana works outdoors on a building site. He wears long sleeves, sunglasses and a cap to cover his skin against the sun.

Dewi Rasmana Photo: Dewi Rasm ana (left) has had little experience of being teased for being different. (ABC News: Phil Hemingway)

He too was born and raised at Ciburuy, and says he is a distant relative of Nana Suryana. Neither his wife nor his two daughters are albino.

His wife is five months pregnant, and doctors say the unborn baby has normal pigmentation. In fact Suryana says he is unique in his family and is accepted by those around him.

"I'm proud of my dad because he's unique," said his 14-year-old daughter Ai Rosmiati.

Barely 200 metres away, Entar Mariyati is in her 60s. She too has albinism, but says she knows nobody else in her family with the condition. Her son and daughter have normal pigmentation.

Entar Maiyati says she knows nobody else in her family with the condition. Photo: Entar Maiyati says she knows nobody else in her family with the condition. (ABC News: Phil Hemingway)

Around the corner Nur Hayati has a three-year-old albino girl, Winda, and two older children who are not.

She says it is her husband who carries the gene, and clearly does not realise that she too is a carrier.

Incidence of albinism is much higher in parts of Africa

In fact, many parents have no idea they are carrying a gene at all until a child is born, says Dr Shari Parker, from the Albinism Fellowship of Australia.

She and her sister both have the condition.

"The vast majority of our family in Australia have had no prior history of albinism anywhere in the genes, because it's hidden until two people who happen to be carriers come together," she said.

Jajang Gunawan Photo: Usman Lukman Nulhakim (right). (ABC News: Phil Hemingway)

In Australia, roughly one in every 17,000 people is born albino, meaning there are about 1,400 Australians today with the condition.

But the number of carriers is 240 times higher: one in 70 people carry a gene, of which there are about a dozen different kinds.

The incidence of albinism is much higher in parts of Africa, where as many as one in 3,000â€"5,000 people have the condition.

In pockets of the South Pacific, the incidence is higher again â€" as many as one in 500. And at Ciburuy, the rate appears to be even higher, though villagers say they are unaware of any formal study.

Today there are 10 people in the village with albinism â€" and others who have moved away â€" from a population of just a few hundred people.

Suryana Photo: Suryana says he is unique in his family and is accepted by those around him. (ABC News: Phil Hemingway)

Still much to learn about albinism

The number of people who carry an albinism gene at Ciburuy is clearly far higher than in Australia.

Dr Parker says there is no question it is much harder to live with albinism in Asia or Africa than Australia, because of the sun and high risk of skin cancer, as well as the social stigma in a country where there is less ethnic diversity.

Poor schooling and poverty in a village like Ciburuy can also limit the education of a child with albinism.

"Having low vision you may struggle to see the blackboard, and you don't have all the vision aids that kids in Australia have. So they're not likely to get even a basic primary education," she says.

"And as a non-educated person, where are you going to work? You're going to work out in the field and you're going to get skin cancer and sunburn and likely die at a young age."

Winda Ayu Lestari (mother- Nur Hayati) 2.jpg For a child to be albino both parents must carry a gene. Photo: For a child to be albino both parents must carry a gene. (ABC News: Phil Hemingway) Nur Hayati's three-year-old daughter Winda is albino, but her two older children are not. Photo: Nur Hayati's three-year-old daughter Winda is albino, but her two older children are not. (ABC News: Phil Hemingway)

Even the cost of sunscreen in a village like Ciburuy is prohibitive.

But Dr Parker says persecution of albinos is worst in many African countries, where they are considered non-human, even ghosts.

Superstition in Tanzania for example has seen many albino people murdered so their body parts can be used in witchcraft.

The average life expectancy for someone with albinism in Tanzania is about 30, because of the combined risks of skin cancer and attacks.

Dr Parker says there is still much to learn about albinism, and why its incidence is so different between Australia and countries in Africa or the South Pacific.

The Albinism Fellowship of Australia is planning new research using social media to identify the true number of people with albinism in Australia.

Topics: genetic-disorders, indonesia

First posted April 22, 2018 04:50:04

Contact Anne Barker

Source: Google News | Berita 24 English

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