Living with leprosy, and forgotten

“No one ever came to see me on visiting days. That’s when I started asking what happened to my parents,” she says. “At that tender age, I didn’t have an idea what it was all about.”Both parents were infected with leprosy before her birth. She began living with her father at age 11 months, after […]

“No one ever came to see me on visiting days. That’s when I started asking what happened to my parents,” she says. “At that tender age, I didn’t have an idea what it was all about.”
Both parents were infected with leprosy before her birth. She began living with her father at age 11 months, after her mother was admitted into a leprosy settlement for treatment. After that, she spent most her life in boarding school.
The only time her father visited, school officials wouldn’t let him get anywhere near students. With late diagnosis and inadequate treatment, leprosy had irreparably damaged the nerves in her father’s limbs, leaving him disabled.
“When they got to know he doesn’t walk like every other man, they asked, ‘why is your father walking like this? Why does your father not have fingers?’” she remembers.
Her life could have turned out different and better, if her father’s illness had been detected early and treated.
Instead, she fought hard—selling bits of edibles to put herself through school and care for two younger brothers.
She didn’t have leprosy, but that didn’t stop the stigma associated with a much-feared and largely-misunderstood illness from wrecking her life. Children didn’t play with her because they feared her body sweat could infect them with the leprosy germ.
Every 20 minutes, one child in the world is told they have leprosy, experts say. But even more children not infected are more affected by the condition that afflicts their parents.
They face barriers to education due to poverty and stigma, according to the Leprosy Mission Nigeria, and this initiates a vicious cycle that limits opportunities for a better future.
TLMN estimates more than 200,000 affected people live in extreme poverty, socially excluded and struggling for food, clothing and shelter.
The demands for their treatment and possible rehabilitation—when the illness is detected early—in designated settlement camps have been met by donations funnelled through groups such as the 140-year-old Leprosy Mission.
TLM Nigeria wants to detect and cure 5,000 new cases of leprosy each year; prevent disability in 3,000 and ultimately achieve zero new transmissions, which currently stand at 4,000 a year. The bill for that is N35 million a year.
It runs a leprosy camp in Alheri, just outside the FCT, where it provides treatment for patients, housing for hundreds of affected families and schooling for their children. Empowerment programmes could potentially target 18,000 people. But at least 7,000 children affected by leprosy may not be able to go to or stay in school.
Doing all that could cost some N110 million a year. Up until now, more than 90% of financing for such work comes from foreign donors, but those have begun to tighten the purse strings and shift focus.
Globally, funding for leprosy is static or dwindling amidst competition from other bigger diseases, says Geoff Warne, general director for TLM International.
Governments are definitely scaling down funding for leprosy.
“One of the reasons for that is there are other bigger health problems. You think about Nigeria, you think about the combined issue of HIV, malaria, TB—it is huge and by comparison to that leprosy seems small and quickly government attention gets turned from leprosy to what seems to be a bigger picture and as a result resources get shifted.
“As far as donors around the world are concerned, our experiences around the world is that funding is pretty much static. It takes a lot of effort to increase funding and even a lot more effort to maintain funding.”
Leprosy for years has been largely forgotten and is now categorised as a neglected tropical disease, even though proponents believe the next 50 years could be endgame for the illness. But it could be “quite difficult to sustain the revenues that are needed to make that happen,” says Warne.
“One of the things we are urging governments to do is not to stop paying attention to those big diseases but also to give leprosy its proper attention,” he said.
TLM Nigeria for the first time started an endowment fund for at least N7.5 million to keep some 247 children affected by leprosy in school for the next academic year.
“Foreign donors are no longer supporting us as they used to do before. [They] are the ones now asking us to look inward,” says Lami Ahmed, who’s on the TLM Nigeria board.
“Nigeria is seen as the richest African country and so we go cap in hand begging all the time. There is a conflict of image: we begging and the things we do.”
The thing to do is to create a culture of giving what is needed to sustain funding for leprosy or any other health cause.
“Giving is still growing in this country. People are still so focused on themselves yet but we still believe there are people out there who, as it grows, God will touch their hearts,” says Dr Sunday Udo, director of TLM Nigeria.
The other option is continued dependence on funds from outside the country which is “not a very sustainable way to work.”
“There are Nigerians who are rich out there, people who have money and good heart. [Leprosy] is our problem. [The West] doesn’t have leprosy in their countries. We have leprosy here. Why can’t we be our brothers’ and sisters’ keepers?”
Artistes like Chika Okpala, famed for his comic television persona as Zebrudayah, and singer Alex O have become voices to drum up support and empathy for people affected by leprosy.
“I don’t know which government in Nigeria has actually brought out time to talk about this segment of society,” says Okpala, a goodwill ambassador for leprosy.
“They abound, they are everywhere. They are not accepted in schools and we haven’t built schools for them in their settlements.”
Beyond care, simple awareness can prevent people from contracting the disease, make them accept medication, live in controlled areas where they can be treated, says Ahmed.
“You may have a good heart but you need money, you need support,” she adds.