Leprosarium battles society's prejudice

Leprosarium battles society's prejudice

Text and photo by Erma S. Ranik

SINGKAWANG, West Kalimantan (JP): At first glance there is
nothing unusual about Abdul Gani Mahmud, except that he is seated
in a wheelchair.

And then you see his gnarled hands and feet, the signs that he
has suffered from leprosy.

The 51-year-old is a resident at Alverno Leprosarium in
Singkawang, Bengkayang regency, who along with 34 other patients
receives free medical treatment.

Abdul, like many leprosy patients for whom the term "leper"
denotes their disenfranchised status in society, only sees his
family on major holidays. He was declared free of the disease and
returned to stay with his sister, but his brother-in-law refused
to live under the same roof with him.

The leprosarium has long been a refuge for leprosy patients
since its establishment on Nov. 17, 1925. Sister Raphael Hostel
of Alverno's nursing department said the Dutch colonial
government in 1911 recommended that the local Catholic church
paid particular attention to lepers in Singkawang and its
environs. Monsignor Bos, then apostolic vicar of Pontianak,
instructed missionaries in the area to follow up the appeal.

Sisters of the Franciscan Congregation responded by gathering
lepers in Pontianak in 1912 for resettlement in a leper colony
near Singkawang. Exiled to an uninhabited island near Suak Bay,
they fled after one night.

In 1914, several modest houses with a chapel were built for
them at the expense of the Dutch-aided mission. Sister Cajetana
van Tiel, a nurse for lepers, arrived that year, followed by two
others, Sisters Achilla and Wilhelmia.

"Now I'm doing their job," said Raphael.

Alverno is under the ownership of the Pontianak archbishopric,
while its management is handled by the West Kalimantan province's
health office.

The hospital's supporting facilities include polyclinics,
inpatient service, reconstruction surgery, laboratories,
diathermy, physiotherapy, ergotherapy, simple prosthesis and
rehabilitation units. A chapel, a Franciscan convent and a
graveyard for lepers are also within the compound.

The graveyard is a poignant remembrance of leprosy patients
who lived and died at the leprosarium. Their gravestones show
they came from all walks of life -- rich and poor, Chinese
immigrants and native people. Some of the graves are simple and
unmarked; others are elaborate tombs to their residents.

Only about half of the 120 inpatient beds are occupied, with
most of the people receiving outpatient care. Alverno treats
patients from across the province, but Raphael indicated that the
number of lepers in the region was not unusually large. Health
ministry figures put the national leprosy rate at 2.98 out of
every 10,000 people in 1998. Most of the cases today affect the
poor, particularly in the eastern part of the country.

The disease comes in two major types, lepromatous leprosy and
tuberculoid leprosy, which are caused by the bacillus
Mycobacterium leprae. Raphael said the former was potentially
contagious through contact for people with a weak immune system.
Thoroughly washing one's hands after interacting with a leprosy
patient is one way of avoiding contracting the disease. With
today's medical advances, those infected with the lepromatous
type can be cured within one year to one and a half years, and
those with the tuberculoid form within six months.

Common symptoms are sometimes confused with nonspecific skin
disorders. In the early stages, white blotches on the skin
(similar to a skin fungal infection), red spots, thickening of
the skin and/or nodules appear.

Gradually the skin turns blackish blue, followed by hair loss
and numbness at the site of infection. Loss of limbs occurs in
the final stage of the disease.

Stigma

Progress has been made in knowledge and treatment of the
disease, but the battle goes on against its stigma.

Raphael said in the early 1980s, sufferers of leprosy admitted
to the hospital were mostly in the advanced phase and had lost
their limbs. Today, the condition of those examined is usually
still in the early stage, when they can respond well to drug
treatment.

The leprosarium also educates the local community about the
disease.

Since local people are not interested in formal information on
leprosy, "we conduct such operations under the guise of a free
medical service", Raphael added. Last year, 10 more patients were
found in the regency, and none of them suspected they had
leprosy.

Anastasia Sonai, now an outpatient at the leprosarium, visited
a rural public health center to treat red spots on her skin and
went on a fish-free diet for a year. The 50-year-old woman was
only diagnosed with leprosy at the leprosarium. She is now
getting better after eight months of treatment.

Unlike other people convalescing from an illness, people from
the leprosarium are often not welcomed back home by their
families. Many members of the public believe in the age-old
stigma that leprosy is a punishment from God.

"'Leprosyphobia' continues to prevail in society," complained
Yolanda Lince, an Alverno staff member. She said that even
doctors and nurses refused to treat people with the disease, and
their only hope was at the leprosarium.

As a solution, 35 of the patients have been resettled within
the hospital complex and Singkawang.

Others have been resettled in nearby villages, such as Hok Lo
Nam, Pakunam and Roban, and are married and have children.

Their life is not easy. They grow vegetables to meet daily
needs, but most customers will refuse to buy the vegetables if
they know they were grown by former leprosy patients. Some of the
produce is sold to nuns, priests and other members of the church
community, while the remainder is covertly delivered to
wholesalers.

Their wait for acceptance goes on. Udin, 50, contracted the
disease at the age of 10, but by the time he was treated at
Alverno in 1981 he had already lost his hands and feet. He covers
his deformed limbs with black socks and moves around with the aid
of a used car tire. He remains at the leprosarium, and waits for
the rare days when his family overcomes their fear, shame and
ignorance to visit him.