By Bibbi Abruzzini
KATHMANDU, Oct. 9 (Xinhua) -- People with albinism are born with a deficiency of melanin pigmentation. The lack of pigmentation in the hair, skin and eyes makes albinos stand out in a crowd and are oftentimes the object of ridicule and snide remarks from bystanders.
In Nepal's isolated areas with little access to medical information, people with albinism remain surrounded by an aura of mystery. They are faced with challenges in a world of spiritual beliefs and superstition.
"Most people think that I am a foreigner and ask me why I speak Nepali so well," Rupa Pariyar, who is an albino, told Xinhua.
Urmila Pariyar, Rupa's mother, said that she has six children but four of them, including Rupa, are albinos.
Rupa's family has a health condition that affects one in 17,000 people in Nepal. In almost all types of albinism both parents must carry the gene for it to be passed on, even if they do not have albinism themselves.
Urmila and her husband both have normal melanin pigmentation and look like standard Nepalese citizens. "We would never have thought that our children would be blond and fair-skinned," Urmila said.
At the sight of her blue eyed and extremely pale son, or her angel-like daughter, many people in Nepal get confused.
"It takes a while for people to understand that my children have the same blood running through my veins and yet they look different," Urmila said.
This rare, genetically-inherited condition causes vulnerability to the sun and bright light. As a result, people with albinism, like Urmila's 8-year-old son Ajay, suffer from sight problems.
"He is a talking machine and he is very naughty. He should avoid excessive exposure to the sun but he never wears sunglasses or sunscreen before leaving the house," Urmila said.
But behind the facade of this joyful family lies a harsher reality. Urmila told Xinhua that she was married off at 13 in her village located in Dhading, one of the remote districts in the central region of Nepal.
Her husband is an alcoholic and has recently found a job in India. Urmila is now working for a catering service in Nepal's capital, Kathmandu, while taking care of her six children at home.
In addition to a precarious economic condition, she also has to fight against the alienating social stigma that her children may suffer in their community. Protecting her family and showing her kids the right path to follow are Urmila's priorities.
"Seeing how hard my mother works helped me understand a lot more about life," Rupa said. Her blue eyes were so translucent that they seem to be the reflection of sunlight on water.
The 16-year-old girl dreams of becoming a doctor and is currently studying in an English boarding school two hours away from Kathmandu. She said that in school they have never been taught anything about albinism. It was her uncle who first explained to her why she and her other siblings look so different from other Nepali kids.
In Nepal, statistics on the number of albinos are inexistent and the condition remains a taboo in most of the country"s rural areas.
"In Nepal, people talk a lot behind your back and being different is often seen as a fault rather than a virtue," Rupa explained.
This family of albinos, however, feels lucky, as contrary to other regions of the world where they would suffer widespread persecution. They never felt in danger and have never been ostracized in Nepal.
In many parts of Africa, albinism occurs at higher rates than in much of the world. A United Nations report on albino persecution put Tanzania, where roughly 35,000 people have the condition, at the top of a list of African nations where albinos face a near-constant threat of violence.
The largest concentration of albino families in the world is in India where they also face hardship and discrimination.
There is actually a need for a worldwide information campaign for people to know that albinos are human beings and should be treated as such despite their fair skin and blue eyes.
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