Families of leprosy victims face bleak future

XIDE LEPROSY VILLAGE, China, Oct 31: Jibuwuniu has lived in a leper colony all her life even though she has never suffered from leprosy.

The 28-year-old, who lives in Xide leprosy village in the mountains in China's southwestern province of Sichuan, is one of tens of thousands of descendents of leprosy sufferers who still live in leper colonies, or villages, across China.

''My parents suffered from leprosy, but they have recovered.

Nobody in my family has the disease now,'' said the mother of three as she nursed her baby outside the local school.

There are about 300 people living in Xide village. About 50 of them are the elderly original patients who were forcibly institutionalised in the remote leprosy villages far from their families four decades ago after being diagnosed with the disease.

The infectious skin ailment is now easily cured with a six to 12-month course of antibiotics. None of the original residents or their children and grandchildren suffer from the disease.

Yet the stigma of leprosy has meant that even the perfectly healthy children and grandchildren of the original patients are treated as if they have leprosy.

Ostracised, impoverished and illiterate, few dare to leave.

''I have recovered lepers at home, nobody will hire me. Not only am I uneducated, I don't even speak Mandarin,'' said Jibuwuniu, who has left the village only a few times in her life to buy provisions.

''That's why I want to send my children to school. If not, they won't be able to speak or write Chinese and they won't have a future. I don't want them to be like me,'' she added.

Many of the residents are members of the Yi ethnic minority, an indigenous people living on the high plains of southwestern Sichuan and Yunnan, who speak their own dialect.

Tales abound of how leprosy sufferers have been abandoned by their families even after they recovered from the disease, leaving them no choice but to remain in leprosy villages.

Those who leave are shunned and often barred from buses and trains.

''I left and found work outside but it was very difficult.

People are afraid of us because we have no eye lashes and eyebrows,'' said Cao Fuku, 56, a recovered leprosy sufferer, who has several missing fingers and no facial hair.

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Fear and prejudice are so ingrained that even those who have recovered turn against the newly infected. In Xide, villagers kicked a 13-year-old orphan out of the primary school last year when he was diagnosed with the disease. The boy now lives alone in a broken shack high up in the mountains, far from the other villagers.

Authorities sent leprosy sufferers to far-flung villages in remote, inhospitable locations between the 1950s and early 1980s.

Health officials only stopped institutionalising sufferers when an antibiotic treatment was introduced in 1982.

Every now and again, people in these villages become infected with leprosy, which is easily prevented with good hygiene.

Many residents live in squalid mud-huts, eating and sleeping with their pigs, goats, cows and chickens. Many of the homes are soiled with refuse and animal excrement.

Not only do the animals roam freely in the houses, they often eat out of the families' large communal woks.

''They keep the animals in the house at night because they are afraid they will be stolen,'' said Huang Lixiu, a Catholic nun who has been taking care of leprosy sufferers since 2000.

''And they continue to eat from the same wok even when the animals are feeding off it. That's why they are susceptible to disease, not just leprosy, but all sorts of diseases,'' she said.

Adding to the villagers' hardship is the struggle to grow vegetables and grains because they have little arable land.

At home in Xide village, 19-year-old Shamaqusha, who has her infant strapped to her back, scatters a handful of corn on the dirt floor to feed some chicks as a piglet darts into the house.

Many huts consist of just one living space, with a bed for people in one corner and straw bedding for animals in another.

Many residents still dream of leaving these rundown villages, despite the discrimination they will face if they leave.

''I've never left the village, I have no money. I have a young brother and I have to take care of him. I want him to go to school and work outside one day,'' said Jilieguoha, 19, an orphan.

REUTERS