At first sight, the village of Rokwe on the outskirts of Juba looks like any other village in South Sudan. The sun shines bright on the grass roofs of the mud huts and sounds from a church choir practicing can be heard in the distance. Only the scenery at the local health centre gives away that this is no ordinary place. Dozens of patients seek shelter from the sun on the concrete veranda. Many have more than one disfigured limb. Some are able to move around, others struggle to walk. Rokwe is a leprosy colony.
Erkolan Onyara was only 13 when he discovered a few sore spots on his legs. He did not know what they were, and when more painful spotting appeared all over his body, he showed his mother. Recognising the symptoms from her own illness, she got very upset. Erkolan -just like her- had leprosy. Soon, he lost sensation in the affected skin areas and the wounds started to get infected. By the time his illness deteriorated, his mother had passed away.
Not knowing how they could care for Erkolan, the family heard of a village where people with leprosy were cared for by a group of church brothers. Erkolan’s elder brother brought him to Rokwe in 1976 and the St Martin De Porres Brothers adopted him to the colony. Erkolan remembers his first months in the village like it was yesterday. “I was all alone and I felt scared. I did not know anyone and I did not know what was happening to my body. It was a difficult time for me.”
Like many leprosy sufferers, Erkolan was losing sensation in his hands and feet, leading him to often cut himself or injure his feet whilst walking. When he was 19 years old, disaster struck. “I was cooking dinner and tried to grab a pot that was on the fire. I did not feel the heat and both my hands burnt very badly. I lost my fingers and part of my hands.”
Life as a young boy in the colony was a struggle for Erkolan. With the help of some of the Brothers he had built a small tukul [mud hut], but as a boy alone he had trouble to feed himself. “I could not work because of my disfigurement. I went fishing in the Nile sometimes or try and grow some crops to eat, but often I was hungry.” One of the Sisters from a nearby parish used to visit Erkolan and help him with basics like cooking and laundry.
The small health centre the Brothers ran from within the colony was chronically under-resourced. The ongoing war made the supply of medicine unstable. Still, they were determined to treat the village’s patients and cure them from their leprosy. Erkolan’s illness ended in 1986, but it had taken its toll on the young man’s body: his hands were badly disfigured and he missed several toes, causing him instability when walking.
Despite being cured of leprosy, most of the patients stayed on in the village. Their often severe disabilities made life in one of the poorest regions in the world even harder for them than for most other people. And in the middle of the brutal civil war, the colony to many felt like the safest place to stay.
“Even if patients’ leprosy has been cured years ago, people are still afraid to go near them”
Brother Bruno Dada has been working in the colony for the past 23 years. He says fighting did happen around the village over the years, especially since the army built military barracks very close to the colony. However, the stigma against leprosy has in some way protected the 350-strong village from the violent raids many other places in the area endured. Soldiers used to ignore the village because they believed ‘there was nothing to get’. They were also afraid to enter the colony as they believed they would catch the disease. As Brother Bruno puts it: “There is a stigma. People think that they will get leprosy if they shake hands with a patient, whereas in fact, it is impossible to get infected that way. Even if patients’ leprosy has been cured years ago, many people are still afraid to go near them.”
Despite the preconceptions, many leprosy patients in Rokwe lived in fear throughout the war. Erkolan expresses the anxiety that was felt by many villagers: “We were always afraid because we knew we were vulnerable. If any fighting did break out, we could not defend ourselves.”
Erkolan married a woman from the village and they still live in the hut he built when he arrived as a young boy. He is the proud father of 3 boys and 3 girls, the oldest of whom is now married and lives away. If Erkolan could make one miracle happen, it would be for his oldest daughter to finish her education. “We struggled badly for money and had to take her out of school”, he recalls. “She was a very good student but we just could not provide. We had to send her to get married so that her husband’s family could look after her. I still feel bad about that now.”
A recent gift from an uncle has improved life slightly for Erdokan’s family. He was given an old bicycle, which he uses to go to the forest and collect firewood to sell. “Cycling for me is easier than walking. I can carry the wood on the bike to the roadside. I don’t sell a lot but sometimes I get a few [Sudanese] pounds.” Whilst most South Sudanese are hopeful about the future of their independent country, Erkolan can’t help but be skeptical “There has been no development here for so long. No government cares for us. I hope things will change but we will have to wait and see.”
According to the World Health Organization (WHO) there has been a dramatic decrease in leprosy cases in the past decades- from 5.2 million cases worldwide in 1985 to 805,000 in 1995 and 213,036 cases at the end of 2008. However, more than 200,000 new cases are still reported each year, mostly in poverty-stricken places like Sudan. In Rokwe, the lack of government support for the leprosy patients and their families has to some extend been compensated by the work of international aid organisations. During the war, the World Food Programme and a charity group supplied meals in the colony. Although occasional new cases of leprosy still emerge, the disease is largely under control in the region, thanks to a widespread treatment campaign which cures patients fast and stops spread of the disease.
“I felt scared. I did not know anyone and I did not know what was happening to my body”
For people like Erkolan and others in the leper colony, the treatment came too late. Their illness might be under control, but the damage to their limbs cannot be undone. The Scottish Catholic International Aid Fund (SCIAF), with the assistance of Sudanaid, supports some of the poorest sufferers and their families. They provided them with non food items including 481 mosquito nets, 400 cooking pans, 400 sleeping mats, 400 blankets and 400 jerrycans for fetching water. SCIAF is currently working on a new project with the Brothers to provide income generating opportunities for residents and set up a vocational training centre. They also help improve the housing situation for villages in most urgent need of a new tukul or repairs to stop leaking in the rain season.
One of the beneficiaries of the house repair scheme is Laurence Modi (24). His life story -like that of so many in southern Sudan- is intensely sad. He was brought to the colony in the late eighties by relatives. Only a toddler, his small body was full of painful wounds that were the starting point of a childhood full of suffering. Both his parents had passed away, and tiny Laurence was dropped in the colony together with his sister, who was barely a teenager. The children moved into an abandoned mud hut and were left to their own devices.
Laurence received treatment from the Brothers to stop his leprosy, but his hands and feet were so badly affected that the simplest tasks like making a fire or digging the ground to cultivate land became impossible. He relied on his sister, who fulfilled the mother role, despite being only a child herself. When in 2004 she left the village to get married, Laurence’s small world fell apart. “She was all I had”, he says, fighting back tears as he speaks. “I was really sad when she left.”
Lonely in his tukul, he started worrying about his future. A neighbour had started to cook him food every day and help him out with household tasks, but he knew this could not go on forever. The grass roof of his tukul was leaking and at night during the rain season, he often woke up because of the water dripping down inside. He suffered bouts of depression and saw no way out of his problems.
Early this year, one of the Brothers informed Laurence that he had been put on a list for a new roof. “I thought I was dreaming. I worried so much about the house. I was afraid I would have to go and find shelter at other people’s huts. I built this hut with my sister in 2000, we did it all by ourselves. It means a lot to me to live here.”
The prospect of an improved house has given Laurence reason to look at the future again. When the sun sets over Rokwe each night, Laurence sits in front of his hut and takes a moment to himself. He often dreams of the day he will no longer be by himself. “I would love to find a girlfriend and marry and have children. That is nature. My dream is to improve the house and start a family here.”