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Thursday, June 20, 2019
LAGOS, Nov 8 2006 (IPS) - “When I go home, I often notice that as soon as I come, all the towels, soaps and sponges that were in the bathroom will disappear,” says Isaiah Ojeabulu. He chairs the Human Rights Association of Persons Affected by Leprosy, an organisation in Nigeria, and has himself suffered from leprosy.
Ojeabulu has similar tales from his earlier years. He says discrimination against him started from the moment that he contracted leprosy, a year before he finished secondary school, developing a leg ulcer that attracted flies.
“All my friends deserted me. I felt a sense of loneliness because the other students would move to another part of the classroom. The shame would sometimes force me to leave the classroom,” he told IPS.
Those who are cured from leprosy find there is no respite from prejudice: the physical toll taken by the disease leads many to believe that persons who bear the scars of leprosy are still infected by it. “People always see us as health hazards,” says Ojeabulu, who has fingers that are clawed, and still suffers from a sore on his foot.
It is attitudes such as these which have prompted many of Nigeria’s former leprosy patients to flee society, and take up residence in small groups, in secluded forests – mainly in southern Nigeria.
“My feeling always is that the things have been removed because of me,” Ojeabulu told IPS, in reference to the towels, soap and sponges that vanish with his visits home. “That is part of why I had to settle in the forest after I left the leprosarium.”
Abo forest, where he lives, has become home to some 70 former leprosy patients. According to the latest official figures (from 2004), there are currently just under 5,350 registered patients in Nigeria – down from 250,000 in 1989.
The disease is caused by a bacterium spread by coughing, sneezing and the like, but which is not seen as highly infectious. Leprosy is treated with a combination of drugs, and the number of sufferers globally has dropped from 5.2 million cases in 1985 to 286,000 at the end of 2004, according to the World Health Organisation (WHO).
Nonetheless, “The age-old stigma associated with the disease remains an obstacle to self-reporting and early treatment,” notes the WHO on its website. “Throughout history, the afflicted have often been ostracised by their communities and families.”
Leprosy affects the skin, nerves and limbs, as well as the eyes – resulting in sores, disfiguring lumps and even blindness. Nerve damage may lead to repeated injuries of feet or hands by patients who are unable to feel the pain of these injuries, and the eventual loss of use of these limbs. While leprosy does not result in fingers and toes dropping off, as believed by some, it may cause them to shorten in response to loss of tissue, while bones can be permanently damaged.
“The major problem we have is that society has refused to accept them (former patients) back after they got cured at the leprosarium. There is a lot of discrimination against them,” Godwin Ovbiagele, commissioner for health in Edo State in western Nigeria, told IPS.
Patients may develop disabilities, he noted. “These, added to their eye complications…and the ulcers on their bodies, make them unsightly and frightening to some people.”
But while the forest might provide refuge from adverse public reactions, it offers little in the way of job opportunities – and most of the former patients live in desperate poverty.
Those in Abo forest often go to the nearby highway between the financial hub of Lagos and neighbouring Benin, to beg motorists for money. But this presents its own hazards: a number of former patients have apparently been killed by fast moving vehicles.
For women, however, it may be the only way to make a living. “The women rely solely on begging on the highway, whereas the men complement their income by trapping animals in the forest,” says Ojeabulu.
With a number of former patients having married other leprosy sufferers they met while recovering in a leprosarium, childbirths are common in the forests. Abo alone houses 25 children – sometimes called “forest babies” – five born during the past year alone.
With no school nearby, certain parents send youngsters to relatives living elsewhere to receive an education; but in some instances the children are treated badly by their relations, obliging parents to being them back to the forests.
“We are not happy seeing our children in this forest without education. Once they continue living with us inside the forest, they cannot go to school. Since some of us are not educated, we would have loved our children to be educated,” says Peter Enebulele, another resident of Abo forest.
Adds Ovbiagele, “Their children are their hope. If these kids are well brought up and get good a education they will be in a position to rehabilitate their parents in future.”
Conditions in the forests also make for a harsh life. “I am exposed to the rain and the sun. I don’t want to stay in the forest any more, I want to go to school,” says ten-year-old Ejiro Samson. “If I remain in the forest I will be suffering and I will not be able to go to school.”
Like others in Abo, Samson and his mother live in huts made from sacks of cement, sticks, leaves and plastic bags. The structures are small and dark, as they lack electricity.
Former patients and their families spend the nights on rags spread over muddy floors, and “We drink dirty water from a nearby river. There is nothing we can do, we have to manage it,” says Ojeabulu.
Malaria poses a constant threat, as do snakes. “I was ill and almost died, and then a snake came to meet me inside the hut. I could not run because I was too ill,” recalls Roseline Osigbe.
Ovbiagele promises better living conditions for leprosy victims in Edo State, saying free food and a monthly stipend of about 40 dollars will be given to those willing to leave forests for a government-run leprosarium which currently houses 460 people.
The facility will be expanded if those returning from the forests exceed its current capacity of 5,000, he adds. At the national level, government has put a leprosy control programme in place which aims to combat the disease by dispensing free drugs to all leprosy patients.
But the former patients are not optimistic about government keeping up the monthly payments over the long term. And, “Once the payment is stopped, people will return to the forests,” says Ojeabulu.
Nonetheless, in a country where fear and poverty play a dominant role in the lives of leprosy patients, Blessing Egbo is testimony to the fact that certain Nigerians are able to see beyond appearances.
Her husband, Lucky, contracted leprosy after they married; but Blessing chose to join him in the forest even though she was free of the disease, shocking her friends and family. The couple now has two children – including five-month-old Keseli, the youngest resident of Abo forest – neither of whom has leprosy.
“My family is not happy that I am staying with my husband in the forest. But I don’t want to leave him; that was why I came with him,” Egbo told IPS.
“People laugh at us – they say that my husband is a leper, but I am not bothered about what they say.”
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