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.