'Ignorance breeds leper colonies in China'


By Tan Ee Lyn

Hong Kong - Despite advances in treatment, China has hundreds of "leper colonies" because of deep-rooted ignorance about the disease, medical experts say.

So strong is the stigma that children have been abandoned, while others are deprived of proper care because their parents are concerned their extended family may be ostracised.

"One recovered leper I know was sent away by his parents for medical help. When he recovered, he wanted to go home but his family wouldn't take him back and told him to remain in his village," said Michael Chen of Handa, a non-governmental group that looks after people who have recovered from leprosy.

"What he was most sad about was his mother wouldn't even see him at her death. He has been living in the colony now for over 40 years."

China officially stopped sending lepers to colonies from the mid 1980s and they are now treated at home.

Chen, a dermatologist, estimates there are 200 000 people in China today who have recovered from the disease but are disabled, with conditions ranging from blindness to disfigurement.

Many of them have been isolated in remote villages since the 1950s, and they and their offspring - most of whom have never been infected - have little chance of rejoining society because of the strong prejudice, and their own fears.

"They are no longer lepers, they have recovered. But because they are discriminated against, they can't return to society," said Chen.

Leprosy, also known as Hansen's disease, was eliminated at the national level in China by 1982.

But pockets of infection remain in impoverished parts in the southwestern provinces of Yunnan, Guizhou and Sichuan, and Tibet in the west. Officials estimate there are now 1 600 sufferers of the disease in China.

Even now, those who are afflicted tend to seek help only when their illness - which can permanently damage the skin and nerves, particularly in the limbs and around the eyes - is at an advanced stage.

"Their ignorance and fear of the disease prevent them from seeking medical help because the social stigma is very serious. Stigma prolongs this disease," said Chen.

"Many people try to hide the disease until their condition is so serious they can't hide anymore."

Catherine Yang, another dermatologist with Handa, cited the case of a village chief who would hide his leper son whenever doctors approached him offering help.

"He hides his son and scolds doctors for spreading rumours. They are afraid that if they admit it, the whole family will be affected because the entire village will cut them off. Now, the son has lost one arm and one leg," Yang said.

Leprosy is transmitted from human to human via respiratory droplets. But the transmission rate is low and 95 percent of people are naturally immune to it.

Dapsone was used from 1946 to fight leprosy, but treatment of the disease took a leap in 1982 with the introduction of a hugely successful multi-drug therapy using dapsone, rifampicin and clofazimine. Therapy now takes six months to a year.


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