Tender Care for Leprosy Patients

Xiang Hai An village, located 72 kilometres from Kunming, China, lies on top of a steep mountain hill overlooking a scenic view of the valley below. Fields of bright flowers and vegetable crops sweep across the valley amidst endless rolling hills in the distance.

It is a 25-minute hike to reach the small village that is enclosed by mud-block walls. Originally built in 1926 as a monastery for nuns, it was virtually cut off from the outside world. The decaying remains of a former temple, now used for storage, are still standing. In the early 1950s, the local government took over the area and converted it into a community for leprosy patients, renaming it Xiang Hai An Leprosy Mission. An old wooden door, dating back more than 75 years, opens up to the grounds of the centre.

In the beginning, up to 500 men and women underwent treatment in the village, and there were over 40 doctors and nurses at one time tending to the patients. After being treated and their leprosy contained, the majority of patients returned to their villages, while those homeless or unaccepted by their families remained behind. When Habitat for Humanity Inc. (HFHI) began planning for the leprosy project in 2002, there were 32 patients (23 men and 9 women), aged from 40 to 86 years old; in 2006, there are 18 male and 5 female patients, whose average age is 65. This was the first project for HFHI China, in joint partnership with the American Leprosy Mission.

The project involved rebuilding, renovating and improving housing structures. Roofs were repaired, walls plastered, doors and windows widened for better ventilation, and dirt floors replaced by concrete floors. A new 13-unit structure, each measuring 15 square metres, divided into two rows facing each other, was built to house 12 persons, with one unit to be used as a kitchen. A solar power was installed so that villagers could have hot-water showers; a biogas unit provided light and was used for cooking purposes.

More than 200 foreign and local volunteers spent three months working on the project. Patients received care they had rarely experienced before. The burden of years of isolation had slowly been lifted. Even nearby villagers were amazed at the transformation. Dr. Qian from the County Skin Disease Prevention Station was also impressed: "These are homeless persons-no family, no friends. They were put in this village and have subsequently become a family together. They will have no relatives coming to help them renovate their houses. But they have HFHI and friends to help them."

The village physician, 52-year-old Li Fen, was first affected by leprosy when she was 17. It was then that she decided to learn more about the treatment and made it her lifelong commitment to help those afflicted with leprosy. Although she has never attended medical school, she received training from doctors and at a leprosy centre after she recovered from the disease. At that time there were 130 patients living in the centre. "For all of us who have leprosy, we have suffered too much from the stigma. It is a very personal ordeal we all undergo, one of loneliness and shame that we carry with us all our lives. It was because of the extreme hardships of the patients that I felt I had to devote my life to make it easier for them. I lived with them through their difficulties and will die here too as they do. Although they are now elderly, some of the patients still work in the fields, growing vegetables, raising chickens and pigs for extra income to pay for medicine."

Dr. Li Fen eases the patients' suffering through injections to relieve the pain and gives them medicines and vitamins. Each month, the local government provides each patient with 120 RMB ($15), which is used for medicines and some additional food. "When I first came here as a teenager, I knew I would try to make it easier on the patients here. Life was very difficult for us all. There was little food. People were often on the verge of starvation. The government gave us rice and vegetables, but it was never enough. Patients who were strong enough worked in the fields with me", Dr. Li Fen said. Married with two grown-up sons, her children for a time lived with her at the centre, but later stayed with relatives, she added. "My husband and I sacrificed many things in order to help the people here. Both my children and my husband have been of great support of my work here. It has been a remarkable experience to offer so much of our own lives to others who had no one."

Zhu Chaoping, 62 years old, has a speech impediment and has been in Xiang Hai An Leprosy Mission for over 33 years. He is responsible for cooking and caring for patients who can no longer take care of themselves. He cooks a late breakfast and an afternoon dinner each day for five of the elderly patients, including the oldest, a 93-year-old man, and a blind woman (right). He had been married, but his wife divorced him when she learned that he had become infected. Dr. Li Fen says: "Chaoping may not be able to communicate, but he has a good heart. He has been a compassionate member of this community, who goes out of his way to make daily life easier for the people who cannot care for themselves."

Yang Maoda was born in Zehei Village, located 7 kilometres from the centre. In 1978, when he was just 31 years old, he felt something was changing in his body. His fingers and feet were painful and he began losing feeling in them. When he told his family, they feared it was the early symptoms of leprosy. Soon word reached throughout the village and the people got scared that the disease would spread and affect everyone. "I was told to get out of the village, and I was not sure why they would say this to me", Maoda said. Out of sight of the village, a small simple hut was constructed of bamboo and thatch. He was told to stay there and not to venture out. He would soon understand the feeling of loneliness and hopelessness. "I spent years of lonely days and nights there, feeling guilty, ashamed and without any hope. I could not understand why this had happened to me. I was told to stay in this room and not come out or I would be harmed. My family brought me food and water on a daily basis, but I could not see anyone else. No one sat and talked to me. I felt it might be best to kill myself. I did not want to die, but I did not know what would become of me. For all those years in that hut, I was not aware that many others like myself were also left alone."

Maoda lived in the small room for ten years, until one day in 1988 his parents and the village leaders decided he should get some medical treatment. He was taken to a hospital, where doctors decided he should be sent to Xiang Hai An Leprosy Mission. He has never left. "I felt so happy to be here. There were others who had suffered the same as me. I finally had friends and we were like a family. We shared our experiences and knew we were not alone anymore. I had a meaning in life again", Maoda said. "The living conditions were not very good then. The rooms were dark, dirty and cold. We worked in the fields to grow vegetables, potatoes, corn and raised chickens and pigs. It was a hard life, but it was better than where I had been for all those years. When Habitat and the American Leprosy Mission came here to build new rooms for us, we were all surprised at the warmth of the people. We felt no one cared for us anymore. We got to know the volunteers who came to help us. We were all very happy to have bright new rooms to live in. We had new hope."

Leprosy is a chronic disease caused by leprosy bacillus that invades and damages the nerves, attacking the surface nerves in certain areas of the body. Patients lose feeling in their fingers and toes and are easily injured, resulting in stiffness, cuts, burns and bruises. The disease is capable of causing disability and even blindness if left untreated. Once endemic in China, leprosy was eradicated some 40 years ago, but the physical and emotional scars still remain in those who have survived. Those infected are often ethnic minority groups living in isolated and remote areas, as well as agricultural workers surviving at a subsistence level. Fear and misunderstanding of leprosy have always been a factor in placing those infected into seclusion.

Because little is understood about the disease, sufferers are often ostracized by society and expelled from their communities. Leprosy causes deformed faces, poor eyesight, bone contraction, inflexibility of hands and feet, and anaesthetized skin that sometimes develops into serious ulcers. The World Health Organization estimated that 120,000 people in China had been left disabled by leprosy. In 2004, WHO recorded 407,791 cases worldwide.

Wang Guoping lived in the village of Jiulong, 40 kilometres from the centre, and first contracted leprosy in 1974 at the age of 40. "I had lived a hard life before raising a son and two daughters, working in the fields all day and caring for the children. We were very poor and barely had enough to eat each day", she said. "When I discovered I had leprosy, everyone in the village was scared. I was taken to the hospital, where the doctors decided I should come here. It was very hard on all of us. The room where I stayed had eight other women. It was dark, dirty and cold. We had little space for ourselves." Guoping still enjoys her walks to the vegetable garden. Each morning she carries a bucket of water from where she lives, some 200 metres away, using a wooden cane to balance herself to water the garden. "For over three years now we have lived more comfortably. It is cleaner than before and we have better living conditions because of what Habitat has done for us. We know that there were people who still cared for us."

"We have lived a very difficult life here", Dr. Li Fen said. "When I first came here as a teenager, I knew that the people needed help and encouragement because of the fear, isolation and loneliness they had been through. They had lost all hope. They felt no one cared for them and that they were cut off from the rest of the world. To the patients who were brought here, it was a blessing in a way. It meant they could be with others who had for years suffered alone in dark, quiet places, in locked rooms or remote unsanitary conditions", she added. "For all of us here, we learned from the beginning to live with dignity and a spirit of survival. With support from caring people and organizations, such as Habitat for Humanity and the American Leprosy Mission, they gave us hope. We live as a family in peace now."