Swollen Legs and Heavy Hearts in Indonesia

These days, the forlorn widow never leaves her tiny shack in this bustling island village. She sits in the doorway, an emotional shut-in who rubs her painfully bloated legs and feet as she peers out longingly at a world that shuns her.

“I am too ashamed to go outside,” says Unas, a 48-year-old mother of six, her dark eyes welling with tears. “People look at me like I am something evil. I see it in their eyes.”

Unas suffers from one of nature’s cruelest blows -- a disfiguring disease that has distorted her lower body to three times its normal size. She has lymphatic filariasis, a mosquito-borne malady in which threadlike parasitic worms invade the lymph nodes, the bean-shaped nodules that help control the body’s fluid balance and fight infections.

The affliction’s most recognizable symptom is elephantiasis, named for the grotesque growth of the lower limbs and even sexual organs. The Indonesians call it kaki gajah, or elephant’s foot. In a region also beset with more modern diseases such as AIDS and avian flu, the centuries-old illness remains one of this nation’s most stubborn yet overlooked health scourges.

Worldwide, 120 million people suffer from elephantiasis, most of them in poor, tropical nations where crowding and poor sanitation are rampant, and 40 million of them are seriously incapacitated by the disease. A billion people globally are at risk.

Five years ago, the World Health Organization set a goal of eradicating filariasis worldwide by 2020. Since then, the lymphatic disease has been eliminated in 63 countries. But in Indonesia, which lags behind for reasons including its limited resources and vast geographic area, chronic cases of elephantiasis have increased, from 6,500 to more than 10,200.

“Africa is doing well, India has upped its efforts, and China has virtually eliminated the disease, but Indonesia has been less successful,” said Els Mathieu, a medical epidemiologist for the Centers for Disease Control and Prevention in Atlanta who specializes in parasitic diseases. “They lack funding. But they don’t seem to know where to start.”

Officials here say international health agencies do not understand Indonesia’s challenges in reaching a population of 220 million people spread across 6,000 of the nation’s more than 17,000 islands.

“People think that we are a country like India or Nigeria, which are also plagued by this disease. But they are single land masses, and don’t have our logistical nightmare,” said Gindo Simanjuntak, an epidemiologist with Indonesia’s National Institute for Health Research and Development.

“Still, foreign health officials called us up and asked, ‘Why is Indonesia so slow to start the battle?’ Well, Indonesia is a poor nation and it costs money to hop between islands, as well as hire experts and people to distribute medicine and know-how.”

World Health Organization officials in the capital, Jakarta, acknowledged the nation’s funding woes.

“It is true there is limited funding available to Indonesia, so that scaling up is progressing slowly,” said Dr. Georg Petersen, WHO representative for Indonesia. “Many filariasis programs face competing interests for limited healthcare dollars.”

But Indonesia’s need is particularly dire: Health Ministry officials say the nation spent $2 million on filariasis last year and will spend $3 million in 2006. The need, they say, is at least $25 million a year. Indonesia spends five times the money combating malaria that it does elephantiasis.

“This is a horrible disease, but people survive it, and this is a big problem for the provincial administrations,” Simanjuntak said. “They ask, ‘How many people are dying?’ They want to give money to deadly diseases like malaria. We call elephantiasis the neglected disease -- the government doesn’t care because the fatality rate is so low.”

A national survey revealed that in all of Indonesia’s 33 provinces filariasis was endemic -- meaning at least 1% of 500 people tested had the disease, officials say.

Much about elephantiasis remains an enigma. Whereas malaria can be transmitted by a single bite, filariasis often requires hundreds of bites from infected mosquitoes. The disease is transmitted when male and female worms crawl into the insect bite wound and then spawn offspring inside the victim’s body.

Most affected countries are home to a single type of worm that causes the infection, but Indonesia has three such parasites, experts say. Many people are infected as children, but symptoms often do not appear until adulthood -- after the parasites have reproduced in the millions.

Although there is no cure, the disease can be kept under control with medications that kill the young parasites and help prevent transmission.

Harder to fight is the malady’s stigma and the stereotypes that feed people’s reaction to the disease and its victims.

In Indonesia and elsewhere, many elephantiasis sufferers hide their symptoms and are too ashamed even to seek medical help. Residents believe the disease can be transmitted by touch and give victims a wide berth. Others don’t see the unnatural growth of the sufferers’ limbs as a disease, but a form of voodoo or black magic.

“People say they got the disease from swimming in water that contacted the black magic,” Simanjuntak said. “We try to use microscopes to show them the worms that have invaded their body, but many still don’t believe us.”

Defeating the disease in Indonesia will take more than medicine. “The concept of sanitation in our country must change,” Simanjuntak said. “In countries where they are able to change behavior, the disease disappears.”

Ferdinand Laihad, a Health Ministry official who heads mosquito control efforts, said progress was being made. “The technology is available to win the war, but that is what’s so frustrating,” he said. “Whenever I see someone deformed by this disease I tell myself: ‘We’re going to beat this. I’m just sorry we didn’t get to you sooner.’ ”

One place health officials didn’t get to was Sukadamai, where nearly a dozen people were recently diagnosed with filariasis in the poverty-stricken village of 2,500 families 45 minutes from the capital. Here, nearly half of the residents eke out an existence as farm laborers or common workers, earning less than $2 a day. Most have no money for mosquito netting or regular medical checkups that might fight the disease.

Only a few people diagnosed with filariasis have full-blown symptoms like those of Unas, who like many Indonesians goes by only one name. She has suffered for years, but was only recently informed by health officials doing a health survey of her neighborhood that her enlarged lower extremities were the result of elephantiasis.

Before that, Unas learned to live with her deformity. She wore long dresses to cover her feet and legs, but was too poor to see a doctor. Now she knows the reason for her condition, but that has only brought her additional shame and hardship.

She lost her job as a maid and no one else will hire her.

“The rumors are out in the village, and people are afraid of me,” she says, unconsciously massaging her feet as flies hover around her head.

“My old boss told me to go home. She said that her neighbors would get mad at her for letting a woman like me into their neighborhood.”

She feels betrayed by her body. Her eldest daughter has recently become ill with similar symptoms, and Unas fears that she too has contracted the disease. For that, the mother says, she could never forgive herself.

Her children have all gone to work to bring in money, but the family struggles without Unas’ income. The eldest daughter works as a maid, and even the youngest boys are selling plastic bags at the local market. “My children suffer the mockery of others,” she says, “and they don’t even have any disease.”

One daughter recently came home crying.

“Her friends said, ‘If I had a mother who had a body like that, I would be so ashamed.’ It was like I was a freak,” Unas says. “It hurts. But what can I do?”

A rooster crows in the courtyard as a clutch of neighbors gathers nearby to coddle babies and share gossip. But Unas is too timid to join them.

She prefers to stay indoors, out of reach of prying eyes.

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john.glionna@latimes.com