China’s recovered lepers

When the bus driver saw the elderly passengers he’d been hired to drive to a medical clinic, he put his foot on the accelerator and sped away. The passengers were not surprised.


The group, many of them missing hands and fingers, are used to the stigma of leprosy.


Even though they are cured of the infection, they still live in an isolated colony in China’s southwestern Sichuan province and have done so for decades since being sent there by the government to keep them out of sight.


“This is the first time that I have left ‘the village’ in 47 years,” said 68-year-old He Zhifu from Galuo leper colony.


“I never want to live outside the village. People are so afraid of us. When we approach them, they run off,” he said.


He was among a group of 50 recovered lepers who were taken for eye surgery to treat a condition known as “hare’s eyes”, in which nerves around the eyes die, leaving sufferers unable to blink or close their eyes.


Their eyes always open, sufferers are constantly exposed to infections and light. Many develop cornea ulcers over time and eventually go blind.


“My eye has been hurting for more than 30 years,” said Amulapu, 57, whose lower left eyelid sags so much that it is detached from the eyeball, exposing the underside of the eyelid.


Amulapu belongs to the Yi ethnic minority, many of whom live in the mountainous regions of southwestern Yunnan and Sichuan.


He was exiled to the remote leprosy village of Ganluo in Sichuan when he was diagnosed with the disease 40 years ago. He left the colony for the first time recently when he and fellow villagers travelled to Xichang city for eye surgery.


The journey from their remote mountain-top village took five hours by road and another two hours on horseback.


The eye operations were carried out in a disused school because no hospital in the area would admit the recovered leprosy victims.


In a sanitised former classroom, eye doctor Daniel Chen sewed up both corners of Amulapu’s left eye, propping up his sagging lower eyelid - a procedure that will protect his eye and save his sight.


“This operation reduces the vision field but it will protect the eye from overexposure. Without treatment, they will get very dry, infected and develop cornea ulcers and even go blind,” said Chen, who works for Handa, a charity in China that assists people who have recovered from leprosy.


The disease is officially eradicated at the national level in China.


Once incurable, leprosy can be easily eradicated with a six to 12-month course of a multi-therapy antibiotic treatment introduced in 1982.


However, pockets of infection remain in impoverished parts of Sichuan, Yunnan, Guizhou and Tibet in the west. There are now 3 200 active leprosy cases in China.


The disease was so feared in China that victims were once burnt or buried alive. From the 1950s, sufferers were exiled to far-flung places so they would have no contact with the public.


Some leprosy villages in Sichuan are so perilously high up in the mountains that inhabitants have died travelling to and from nearby villages by having to traverse narrow, steep mountain roads that wind along cliffs.


China stopped institutionalising leprosy sufferers in the 1980s, but hundreds of leper colonies remain.


They are home to about 200 000 recovered lepers and their descendents, who have little or no hope of ever rejoining society because of the stigma of the disease.


No-longer infectious, the recovered lepers still bare the scars of the disease that destroys the skin, peripheral nerves and mucous membranes, resulting in victims losing fingers, toes and limbs.


Many are so cut off from the rest of the world that life in the colonies is more comparable to China half a century ago than in 2006.


“The world has changed so much,” said He Zhifu during his visit to bustling Xichang for eye surgery.

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