A war against leprosy

In southern Sudan, victims of the disease endure in exile

BY TINA SUSMAN | Newsday Staff Correspondent

May 30, 2006

JUBA, Sudan - The shriveled woman with pale eyes and rags cloaking her thin frame held out the flesh-and-bone knob that used to be her hand. Flies covered the scabby, reddened stump, but she was oblivious to them, unable to see the buzzing pests with her blind eyes and unable to feel them with the deadened nerve endings left where her fingers once were.

In the Luri Rokwe leper colony, Santina Nyoka is one of the worst-off residents, though it is hard to find anyone who might be described as fortunate in the blistering, wind-swept settlement on the edge of Juba. Is it the man missing only his right leg, the woman who lost her fingers but not her toes, or the ones who lost only a few of their extremities?

All, by virtue of the disease that can still stigmatize its victims, are living on the margins of one of the most deprived places on earth, proof of how decades of war can turn a curable disease into a life of poverty and isolation.

Sudan's north-south war, which raged for more than 20 years until last year's peace accord, is over, and southern Sudan has its own government with Juba as its capital. But that hasn't changed things in Luri Rokwe, nor is it likely to as southern officials occupy themselves with grander issues, such as obtaining a fair share of oil revenue from the north and turning Juba into a thriving city.

"In a way, it's the peak of misery," said Thomas Reuter, a doctor from the German Leprosy Relief Association. The association has become virtually the sole caregiver for Luri Rokwe's residents, who began settling here in the 1950s when their illness forced them into exile from their own communities.

In recent years, multi-drug therapy has made leprosy a curable disease, but health care was always lacking in underdeveloped southern Sudan, and the civil war left the region a shambles. That, combined with the terror many Africans have of leprosy, led those afflicted to gravitate to Luri Rokwe, where the German organization provides medicine, builds huts and distributes food.

The community's population is now about 2,600, mostly relatives of the original residents. Only 331 are leprosy-affected, but nearly all rely on aid.

Reuter is trying to change that, telling residents that, with a new government to represent them, it is time to establish a formal community, set rules for themselves and demand that the state provide electricity, water, schools and perhaps a paved road. So far, there is little indication his prodding has taken hold, a sign of the dependency that affects much of the war-scarred south.

On a hot and sunny afternoon, the settlement's oldest residents - most of them severely deformed men and women who have been here since childhood - sit silently beneath shade trees, waiting for the insufferable midday heat to pass. Their limbs are stick-thin. Their skin shows the flaky dryness that comes with leprosy. Some wear tattered shoes to cover the rounded stumps of toeless feet.

Their de facto spokesman is Joseph Wani Cirillo, 54, an effervescent man with a nonstop smile who moves easily through the soft, reddish, dusty ground on crutches. "They cannot do anything. They can just think a lot, about what they would like to have," said Cirillo, a trained nurse who hands out medicine at the dispensary run by Reuter's organization.

Cirillo was in his 20s when he contracted leprosy. He remembers the isolation as his brothers and sisters shunned him for fear of catching the disease. After getting treatment in neighboring Uganda, where he lost his right leg as a result of the disease, he returned to Juba, his hometown, to work with others affected by it.

Asked what Luri Rokwe needs, he rattles off a list: shelter, food, water, blankets, clothes, mosquito nets and more.

One problem Cirillo doesn't mention, but which Reuter laments, is that much of the aid that arrives is absorbed by Luri Rokwe's able-bodied residents, even though it is intended for leprosy victims.

Luri Rokwe's most disabled residents are also its oldest, an indication of the lack of treatment when they fell ill decades ago. The drug therapy cure was not available until 17 years ago. Before that, people often were destined to suffer severe deformities as the disease attacked the nervous system and left them unable to feel pain. In Sudan, where cooking over fires, chopping wood and walking barefoot are the norm, people were vulnerable to secondary infections and injuries that led to the loss of fingers and toes.

Nyoka's husband brought her here in 1951 after she contracted leprosy. She doesn't know her age but looks at least 75.

A few years after arriving, her fingers began falling off, something Cirillo guesses was caused by getting too close to the cooking fire day after day. The fingers on her right hand went first, then on her left, Nyoka says through a translator. Then, her toes began falling away.

Charles Dumba fell ill in 1948, at a time when leprosy patients were locked in hospital isolation wards. "Everything was given to us inside. We got care and our parents were allowed to visit us, but we hated the fact that we couldn't go out," said Dumba, who guesses his age to be 70. Once, he said, he tried to sneak out. "I just wanted to see the outside for a while, not to escape permanently," he said, laughing at the memory. Compared to the hospital, Dumba said, Luri Rokwe is great and, like most residents, he appears to have few complaints. That could be because many of the elderly residents here haven't left in decades and have nothing with which to compare their bleak surroundings.

Luri Rokwe's able-bodied residents spend most of their time tending to the disabled or venture only as far as downtown Juba, which is little more than a sprawling, broken-down village. There is nowhere else to go, given southern Sudan's lack of roads.

Even Cirillo, one of the few with the education and physical ability to make a life elsewhere, is satisfied to remain. "I'm in my own village, my own country," he said. "It's good to help my own people."