Leprosarium battles society's prejudice<\/p>\n
Text and photo by Erma S. Ranik<\/p>\n
SINGKAWANG, West Kalimantan (JP): At first glance there is
\nnothing unusual about Abdul Gani Mahmud, except that he is seated
\nin a wheelchair.<\/p>\n
And then you see his gnarled hands and feet, the signs that he
\nhas suffered from leprosy.<\/p>\n
The 51-year-old is a resident at Alverno Leprosarium in
\nSingkawang, Bengkayang regency, who along with 34 other patients
\nreceives free medical treatment.<\/p>\n
Abdul, like many leprosy patients for whom the term \"leper\"
\ndenotes their disenfranchised status in society, only sees his
\nfamily on major holidays. He was declared free of the disease and
\nreturned to stay with his sister, but his brother-in-law refused
\nto live under the same roof with him.<\/p>\n
The leprosarium has long been a refuge for leprosy patients
\nsince its establishment on Nov. 17, 1925. Sister Raphael Hostel
\nof Alverno's nursing department said the Dutch colonial
\ngovernment in 1911 recommended that the local Catholic church
\npaid particular attention to lepers in Singkawang and its
\nenvirons. Monsignor Bos, then apostolic vicar of Pontianak,
\ninstructed missionaries in the area to follow up the appeal.<\/p>\n
Sisters of the Franciscan Congregation responded by gathering
\nlepers in Pontianak in 1912 for resettlement in a leper colony
\nnear Singkawang. Exiled to an uninhabited island near Suak Bay,
\nthey fled after one night.<\/p>\n
In 1914, several modest houses with a chapel were built for
\nthem at the expense of the Dutch-aided mission. Sister Cajetana
\nvan Tiel, a nurse for lepers, arrived that year, followed by two
\nothers, Sisters Achilla and Wilhelmia.<\/p>\n
\"Now I'm doing their job,\" said Raphael.<\/p>\n
Alverno is under the ownership of the Pontianak archbishopric,
\nwhile its management is handled by the West Kalimantan province's
\nhealth office.<\/p>\n
The hospital's supporting facilities include polyclinics,
\ninpatient service, reconstruction surgery, laboratories,
\ndiathermy, physiotherapy, ergotherapy, simple prosthesis and
\nrehabilitation units. A chapel, a Franciscan convent and a
\ngraveyard for lepers are also within the compound.<\/p>\n
The graveyard is a poignant remembrance of leprosy patients
\nwho lived and died at the leprosarium. Their gravestones show
\nthey came from all walks of life -- rich and poor, Chinese
\nimmigrants and native people. Some of the graves are simple and
\nunmarked; others are elaborate tombs to their residents.<\/p>\n
Only about half of the 120 inpatient beds are occupied, with
\nmost of the people receiving outpatient care. Alverno treats
\npatients from across the province, but Raphael indicated that the
\nnumber of lepers in the region was not unusually large. Health
\nministry figures put the national leprosy rate at 2.98 out of
\nevery 10,000 people in 1998. Most of the cases today affect the
\npoor, particularly in the eastern part of the country.<\/p>\n
The disease comes in two major types, lepromatous leprosy and
\ntuberculoid leprosy, which are caused by the bacillus
\nMycobacterium leprae. Raphael said the former was potentially
\ncontagious through contact for people with a weak immune system.
\nThoroughly washing one's hands after interacting with a leprosy
\npatient is one way of avoiding contracting the disease. With
\ntoday's medical advances, those infected with the lepromatous
\ntype can be cured within one year to one and a half years, and
\nthose with the tuberculoid form within six months.<\/p>\n
Common symptoms are sometimes confused with nonspecific skin
\ndisorders. In the early stages, white blotches on the skin
\n(similar to a skin fungal infection), red spots, thickening of
\nthe skin and\/or nodules appear.<\/p>\n
Gradually the skin turns blackish blue, followed by hair loss
\nand numbness at the site of infection. Loss of limbs occurs in
\nthe final stage of the disease.<\/p>\n
Stigma<\/p>\n
Progress has been made in knowledge and treatment of the
\ndisease, but the battle goes on against its stigma.<\/p>\n
Raphael said in the early 1980s, sufferers of leprosy admitted
\nto the hospital were mostly in the advanced phase and had lost
\ntheir limbs. Today, the condition of those examined is usually
\nstill in the early stage, when they can respond well to drug
\ntreatment.<\/p>\n
The leprosarium also educates the local community about the
\ndisease.<\/p>\n
Since local people are not interested in formal information on
\nleprosy, \"we conduct such operations under the guise of a free
\nmedical service\", Raphael added. Last year, 10 more patients were
\nfound in the regency, and none of them suspected they had
\nleprosy.<\/p>\n
Anastasia Sonai, now an outpatient at the leprosarium, visited
\na rural public health center to treat red spots on her skin and
\nwent on a fish-free diet for a year. The 50-year-old woman was
\nonly diagnosed with leprosy at the leprosarium. She is now
\ngetting better after eight months of treatment.<\/p>\n
Unlike other people convalescing from an illness, people from
\nthe leprosarium are often not welcomed back home by their
\nfamilies. Many members of the public believe in the age-old
\nstigma that leprosy is a punishment from God.<\/p>\n
\"'Leprosyphobia' continues to prevail in society,\" complained
\nYolanda Lince, an Alverno staff member. She said that even
\ndoctors and nurses refused to treat people with the disease, and
\ntheir only hope was at the leprosarium.<\/p>\n
As a solution, 35 of the patients have been resettled within
\nthe hospital complex and Singkawang.<\/p>\n
Others have been resettled in nearby villages, such as Hok Lo
\nNam, Pakunam and Roban, and are married and have children.<\/p>\n
Their life is not easy. They grow vegetables to meet daily
\nneeds, but most customers will refuse to buy the vegetables if
\nthey know they were grown by former leprosy patients. Some of the
\nproduce is sold to nuns, priests and other members of the church
\ncommunity, while the remainder is covertly delivered to
\nwholesalers.<\/p>\n
Their wait for acceptance goes on. Udin, 50, contracted the
\ndisease at the age of 10, but by the time he was treated at
\nAlverno in 1981 he had already lost his hands and feet. He covers
\nhis deformed limbs with black socks and moves around with the aid
\nof a used car tire. He remains at the leprosarium, and waits for
\nthe rare days when his family overcomes their fear, shame and
\nignorance to visit him.<\/p>",
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