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'Everybody Thought it Was Witchcraft, so He Died': Doctors Fight to Change Beliefs and Save Lives on Remote DRC Island

On the remote island of Idjwi in Africa's Great Lakes, locals believe rampaging tropical diseases are the manifestation of curses inflicted upon people who deserve to suffer.
Foto di Ruth Maclean

On low wooden benches, clusters of women in bright Congolese prints sat swatting flies and waiting for hours to see the doctor. For many, this was the first time they had ever seen a clinic, let alone been inside one.

They chatted happily and jiggled their babies, but when summoned by the doctor, the reason they were there suddenly became apparent. Underneath their wraparound skirts, many of the women's legs were grotesque — swollen to three times their normal size. Their enormous feet looked like they were encrusted with moss, and they struggled to get up and walk to the consultation room. They had elephantiasis, a profoundly disfiguring disease caused by a parasite living in mosquitos.

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Behind them, Lake Kivu shimmered: silver in the early morning, bright blue at midday, and pink at sunset. The women's home, the island of Idjwi, is one of the most cut-off places in the world. In the middle of one of Africa's Great Lakes, in the Democratic Republic of Congo's most conflict-scarred region, most of the islanders have never seen a newspaper or television. Apart from a prison, there are almost no services on the 131-square-mile island, the 10th biggest inland island in the world. Many people have no education, and there is barely any healthcare.

The island of Idjwi lies in the middle of Lake Kivu, close to DRC's border with Rwanda.

That's because they can't pay for it, according to the King of northern Idjwi, Gervais Ndawenderundi Rubenga. "The people are very poor, so they can't afford healthcare. They have to rely on traditional healers or 'nurse pirates,'" he told VICE News, speaking from his headquarters, a simple tin-roofed office painted bright yellow.

This can have tragic consequences. Recently, all 77 young children in one of the island's villages suddenly died. Nobody knows what it was that killed them.

Average life expectancy on the island is just 27 years, and there is an average of 8.5 children per family, one of the highest rates in the world. The island also has one of the highest rates of tropical diseases in the world — almost the entire population has one. According to doctors working on the island, 90 per cent of people here have intestinal worms, 13 per cent have lymphatic filariasis, which leads to elephantiasis, and 7 per cent have bilharzia, another parasitical infection.

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There are only about 10 cars on the island, and no roads, so most of the island's 250,000 people have just their own two legs for transport. Some of the women waiting at the clinic lived a whole day's painful walk from one of the island's only clinics. It was unsurprising they had not previously managed to make the trip.

Fatuma Kabilambani, 29, was so disabled by elephantiasis that she could no longer work in the fields — the only means she had of feeding her four children, after her husband abandoned her because of her unsightly legs. "It hurts. It's very painful to walk. It hurts my entire body, so much that I can't do anything," she said, in tears. Her legs were covered in cuts — her attempt at a self-cure. "A traditional healer said if he made some cuts, it would heal," she explained.

Most Idjwi people have no idea what causes elephantiasis, and other debilitating tropical diseases. Belief in black magic is strong on the island, providing locals with an explanation for their suffering. Those with the diseases, particularly elephantiasis, are often seen as cursed people, and become outcasts.

"Most people think it's witchcraft," Dr. Mwanza Nash, the health minister for the region, told VICE News.

"A friend I grew up with — I didn't know it then, but he got schistosomiasis. He got a big belly and liver problems. Everybody thought it was witchcraft, so he died."

It was only when he began his medical training that the doctor realized what had really been the cause: tiny worms that live in Lake Kivu. But by then, the ignorance and stigma around supposed black magic victims meant that it was too late.

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Most people who leave Idjwi don't look back. The island is picture-book beautiful, peaceful, and has been left practically untouched by the storms of war and genocide that raged in mainland DRC and Rwanda respectively, just on the other side of the deep waters of Lake Kivu, over past decades.

"We live peacefully with both countries — we have never experienced any war," said King Rubenga, who is well-versed in the history of the island. "We are far away from the mainland, and from the start our ancestors had a good relationship with Rwanda and Congo. Our ancestors insisted on peace — this was very important."

But there is nothing on Idjwi for the ambitious and successful except peace and quiet.

So Jacques Sebisaho, a doctor who often travels to his native Idjwi from his home in New York, is an unusual case. He did his medical training in Rwanda, studied in Brussels, and moved to America in 2002, becoming a respected practitioner, but then he came back to Idjwi on holiday. He was shocked by the poverty he found. Almost none of the island's 250,000 people had access to electricity, clean water, or basic medical care. The millions of banana trees that the islanders used as their main food source had died of a bacterial disease ravaging the whole region, bringing in an era of malnutrition.

Dr. Sebisaho began making regular trips, bringing big bags of medicine back with him and treating people for free. In 2009 he set up NGO Amani Global Works, and built the clinic in which the women sat. Everyone on the island appears to knows and respects the doctor: it can take him hours to get anywhere on the island because people are always greeting him.

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Sebisaho has big plans for the island. One is an almost-complete eco-lodge — in one of the most exotic locations in the world. The small rainforest behind his house once briefly gave refuge to gorillas who could not safely live in their home forests on the mainland, and he is now considering making the forest a permanent home for orphaned gorillas.

Dr. Jacques Sebisaho has returned to his native Idjwi after 13 years in the US to use his medical skills to help fellow islanders.

High on Sebisaho's list of priorities is helping The End Fund, an American NGO, to try to rid the island of the tropical diseases that are ravaging the population.

"How many of you believe that these diseases are caused by witchcraft?" he asked a group of two dozen village chiefs, on a recent research visit to figure out the best strategy to get the simple medicines to every remote corner of the island, and convince people to take them.

Related: Congolese Gynecologist Awarded EU's Top Human Rights Prize for Work Treating Rape Victims

The chiefs solemnly raised their hands. Then they raised their shirts.

All of them had small scars all over their torsos. Traditional healers claim that cutting the belly with a razor blade helps to cure worms, and children as young as a year old are given the "treatment."

Some of the traditional beliefs have been around for centuries, and are very powerful. Sebisaho thinks it is important to recognize and work with them, and is planning to recruit a traditional healer to work at his hospital.

Health workers are teaching people on the island, who believe in witchcraft, about the true causes of tropical diseases.

When Ellen Agler, CEO of the End Fund, explained the real causes of the diseases, the village chiefs immediately asked for the treatment — a few tablets taken twice a year — for themselves. They will take the medicine first, in front of all of their villagers, to show the community that it is safe.

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"I knew the poverty would be extreme but it's hard to see it up close… In this wealthy world that we live in, we shouldn't have 77 kids dying in a village or severely malnourished," Agler told VICE News. "They don't even get a chance to decide what kind of life they want. They're going to start out stunted. And that's what makes me worry about the island — they normalize to a baseline of 'All children have big bellies.' I'm sure that's the case here — kids without big bellies are not normal."

The treatment will kill the worms that are "stealing" all the nutrition from the food they eat, as well as the parasites that cause elephantiasis, and will make them feel better. But it could also have another happy, unintended effect — more compassionate communities, that look after the victims of disease instead of abandoning them.

Believing that they have been cursed, people with diseases try to find out who "cursed" them, Dr. Nash said, which often leads to an atmosphere of suspicion and broken relationships. "Then they have to look for witchcraft. It feeds conflict in the family and community," he said.

A change in people's attitudes could transform the lives of patients like Kabilambani, who has been ostracized by her village because of her swollen legs. "I am abandoned. No one helps me," she said, explaining that after her husband left her, her friends and family would not associate with her either.

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She will not be cured — her case is too far advanced for that — but if she is seen as a victim of mosquitoes, not witchcraft, she hopes her community might be less afraid, and help her to feed and clothe her children.

"My hope for them is that someone will look after them, and they won't be like me," she said.

Related: How the Democratic Republic of Congo Fought A Different Ebola Outbreak

Follow Ruth Maclean on Twitter: @ruthmaclean

All photos by Ruth Maclean