Coming in from the cold

By Erik Nilsson and Yan Yiqi (China Daily) Updated: 2015-05-26 07:27

The chronic disease results in many patients contracting "claw finger".

'Reptile eye'

The patients are visually impaired, too. The bacteria that cause leprosy damage the nerves that control blinking, so eye drops must be administered every few minutes to prevent the patients' corneas from drying out and causing blindness. The residents wear special eye masks when they sleep.

The medical staff members unapologetically use the term "reptile eye" to describe the unblinking gaze of older patients, who usually wear sunglasses and baseball caps to protect their sight.

Despite the challenges, some have excelled. The centerpiece of Xu's dormitory wall is a triptych of beautiful paintings created by his now-deceased neighbor, who held the paintbrushes in his mouth or the crook of his wrist. Meanwhile, Xu has written more than 20 songs about the disease, including People with Leprosy Singing, Warm Sunshine on Us, and Angel of Leprosy.

Xu was 6 when red blotches appeared on his skin, but he wasn't diagnosed until three years later. His father died when he was 4, so his mother had to cope with the stigma on her own. "She was shocked and afraid," Xu recalled.

He was sent to the leprosy village at age 9, but was sent home after a month and medicine was mailed to him. However, in 1974 he returned to the leprosy village for good.

The patients were once shunned, but now they have regular contact with local residents. "People from nearby villages invite us for meals and they come here to eat, too," Xu said. The villagers also send cars to take him to weddings, and their children study the erhu under his tutelage. "I hope more outsiders will learn about leprosy and realize it's not scary," Xu said. "People should treat us as equals."

Yan said that despite greater public acceptance, discrimination still exists. "Professional barbers won't cut the patients' hair, but university student volunteers will."

Buried alive or banished

In less enlightened times, people with leprosy were often buried alive or banished to perish in the wilderness. As recently as the 1980s, patients were kept in isolation and the doctors who treated them wore biohazard suits.

In 1985, China began using medication provided free of charge to member countries by the World Health Organization. The drugs replaced traditional Chinese medicines, which relieved the pain and slowed the advance of the disease but couldn't cure it. About 70 percent of the patients show obvious facial signs of having been "shaped" by leprosy, according to Yan.

Old age and discrimination mean the residents are unable to work outside the village, so the provincial government pays their medical costs, provides 745 yuan ($120) in monthly welfare, and subsidizes amenities such as air conditioning and TV.

Patients are also offered regular psychotherapy sessions. Even so, a group of about 10 regularly attack the doctors, sometimes even beating them with sticks. "I lock my door at night because of them," Wang said.

Staff members use treats to coax violent patients to take medication, but if that fails they resort to injections. "The patients sleep for two or three days afterward," Wang said.