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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.
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| Photo/Mikel
Flamm |
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.
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| Photo/Mikel
Flamm |
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."
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| Photo/Mikel
Flamm |
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."
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| Photo/Mikel
Flamm |
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."
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