The Hidden People Of Niger: Shunned From Society, And Left To Die

Never would I have believed that a person could be hidden as if they had died, as the only alternative to casting them out from the family home to beg for survival.

That's until I visited the remote Maradi region of Niger, one of the poorest nations on Earth, where almost half of the population lives below the poverty line and daily survival is a challenge even for the strongest and fittest.

Arid and insufferably hot, the landscape is reminiscent of a film set with camels roaming freely and tiny hamlets scattered across the vast desert lands of Sub-Saharan Africa.

It is here where I met Bunmi Oluloto, country leader for The Leprosy Mission Niger, and heard about his passion for finding "the hidden people" and bringing them an antibiotic cure for leprosy. If given in time, the medicine can be these people's chance to piece their devastated lives back together.

Oluloto is a Nigerian who felt "called by God" to help people affected by leprosy, the very lowest of the low, and moved his family across the border to Niger to do so 12 years ago.

Leprosy is a disease that attacks the nerves. If left untreated it can lead to the loss of limbs and blindness. But since 1982, it is completely curable with a combination of three antibiotics known as multi-drug therapy.

"It is such a complicated disease, as it is as devastating socially as physically," he explained.

People who contract this disease are also affected by stigma and prejudice and face isolation by the rest of the community.

"If a person is seen to have patches on their skin or the early signs of leprosy, the best they can hope for is to be hidden inside by their family," Oluloto said.

"If their neighbors find out someone in the house has leprosy, the whole family will either be shunned or thrown out of the community, their reputation in tatters. The only alternative is to cast the individual in question out, never to be seen again.

"It is a situation that makes me weep. We can only hope to track down people needing the treatment for leprosy and give them the cure before they develop life-long disabilities and, crucially, pass the disease onto other family members," Oluloto continued.

As a Christian NGO, it is not without personal risk that Oluloto and his team can go into these predominately Islamic communities. It is important to remain vigilant and follow security advice. Only last year, a Christian American aid worker who had worked in Niger for 25 years was kidnapped from his home at gunpoint and taken over the border to Mali.

Oluloto's work also requires diplomacy and building trust with village chiefs.

"It is not a case of going into a village and holding a meeting as people believe leprosy is a curse. There is no way anyone would come forward to listen," said Oluloto.

"So it is a case of gaining the trust of the village chief, educating him about leprosy and then going door to door telling people about the symptoms, asking them if they have the symptoms and checking them, and then getting the treatment to them."

The latest World Health Organization statistics speak volumes. While in India, a country where there is a significant prejudice surrounding leprosy, just four percent of new leprosy diagnoses had a visible disability in 2016, in Niger the rate was of 24 percent in the same year.

"This statistic is troubling us greatly," said Oluloto. "There are so many people out there with untreated leprosy that we need to find before they become desperately disabled. Disability is so unnecessary. The age-old stigma and myths surrounding leprosy are so frustrating. It is an easily curable disease."

The village of Danja in Niger's Maradi region is a shining example of people affected by leprosy living stigma-free lives within their community. Tragically, however, they remain an isolated community—feared and reviled from the outside—but the one positive is that there is safety and camaraderie in numbers.

The population of Danja has rocketed in the past few years as people with leprosy flocked to Danja Hospital, where The Leprosy Mission provides free treatment and care to people affected by leprosy. A beacon of light and, indeed, the only possible light to a desperate cast out leprosy sufferer, patients often choose to remain in Danja after they have been treated, the lack of stigma and free medical care on hand providing the incentive.

Fifty-seven-year-old grandmother Habsou is one such Danja resident. She is blind and disabled by leprosy and was only able to feed her four children by begging on the roadside. Instead of being given the cure for leprosy when she first showed the symptoms at the tender age of five, Habsou's parents hid her away in a hut while her leprosy progressed unchecked, savagely attacking her body.

Habsou finally came to Danja Hospital aged 13. By then she had already lost her fingers and toes and her sight was fading.

Leprosy in Niger
Left to right; mother Mariama, grandmother Habsou and granddaughter Saoude pictured in Danja, southern Niger. The Leprosy Mission

Habsou's leprosy-affected husband died when she was pregnant with their youngest child Mariama. But despite never having the disease, the chains of leprosy also incarcerated Mariama. When she was 15, Habsou told her to marry a leprosy-affected man much older than she was, as she could no longer afford to keep her.

Mariama was considered tainted and "dirty" because her parents had leprosy. No boy from a respectable family would ever consider marrying her.

It was against Mariama's will to marry this older man, but she had no choice. She soon became pregnant with Saoude.

Saoude is a bright and vivacious eight-year-old with high hopes of training to be a nurse when she grows up. She says she can then make people like her granny better.

Youth is a wonderful thing. A child born into abject poverty or surrounded by the most difficult of circumstances can genuinely believe there will be an end to the seemingly unbreakable cultural chains. But the reality of having a leprosy-affected grandmother and born into poverty means Saoude, and other children like her in Niger, may not get an education, and could be forced to marry young as her parents cannot afford to look after her. She may have to marry someone from the leprosy community and not of her choosing. Without intervention, she will undoubtedly be sentenced to poverty because of the chains of leprosy.

The Leprosy Mission in Niger, however, is inspired by young Saoude's vision and is campaigning to break the chains of leprosy in Niger by giving children a secondary education. The latest United Nations data shows just eight percent of boys and four percent of girls attend secondary school, and offering job training and opportunities to start up a business to their leprosy-affected parents. There is hope for young Saoude and her family.

Leprosy in Niger
Helen Walton, Community Development Manager for The Leprosy Mission, with Saoude in Danja, southern Niger. The Leprosy Mission

Helen Walton is Community Development Manager for The Leprosy Mission. For more information visit www.leprosymission.org.uk