The greatest challenge for people struck with leprosy is stigmatisation. The rejection even by family members and close associates is as old as the disease itself.
Sadly, even after being totally cured, they are still regarded as patients and often condemned by the rest of the society to live in isolation for the remaining days of their lives. Over the years, this has become, for the survivors, a psychological burden.
Those who have been afflicted with leprosy are ostracised and quartered in colonies, where they are expected to live out their lives. At the camps, the healed lepers are abandoned by government and their relatives. They are perpetually demoralised as their self-esteem is deflated beyond anyone’s imagination.
Leprosy is an infectious disease that causes severe, disfiguring skin sores and nerve damage in the arms, legs, and skin areas around the body. If not quickly treated, it could lead to permanent deformity in some parts of the body including the skin, nerves, arms, legs, feet, and eyes.
The disease has been around since immemorial times, and leprosy sufferers have always been ostracised and treated as outcasts.
In a chat with the national coordinator of Voice of Humanitarian Aid Foundation (VOHAF) in Lagos State, Franca Emekobum, Daily Sun learnt that the non-governmental organisation (NGO), which was formed in 1998, assists people that are affected by leprosy as well as their family members.
She strongly kicked against the permanent isolation of these patients, preventing them from mingling with the rest of civilised society. She said that the age-long notion by many people that leprosy was a disease that was easily contracted has not helped in anyway to assist the patients to surmount their problems.
She also lamented that the social stigma attached to leprosy was far worse than the disease itself, and it was disheartening how the patients have been neglected and forgotten for years by people who were supposed to give them succour.
Emekobum said some of the centres she and her team have visited revealed a true definition of punishment for the patients. She said one of such places was Okobaba in Lagos, where there is no sewage system. She added that the centre in Ojo, Lagos State, was also in a squalid condition. She said the general living condition of the people has not been encouraging.
Emekobum recalled her team’s experience on a trip to one of the settlements on the outskirts of Iberekodo, a village in Abeokuta, Ogun State. She said the team’s vehicle could not access the centre because of the deplorable state of the road. The visitors had to walk for minutes before getting there, she said.
She asserted that raising a team that would be on the field, giving succour to the survivors, remained a difficult task. No one was ready to be associated with anyone affected by leprosy.
“People see it as a terrain that any normal human being should not dare. Despite that, we have been visiting the centres where these survivors and their children are kept; empowering them economically; supporting their welfare and encouraging them not to lose hope.
“At the Oji River centre in Enugu State, we were able to empower three people by helping them to start small-scale business. We also have three children at the centre that we have given education scholarship. At Ijebu-Igbo, in Ogun State, we have given six scholarship to students.
“For these 21 years, government has not supported us for once. We have not also got any foreign donor. It is just individual contributions and donations from a few churches that has been sustaining us,” she said.
She stated that the good news about leprosy was that the infection was 100 per cent curable, after which the patient could lead a normal life. More interesting, according to her, was that the treatment was free at all government hospitals already earmarked for that purpose. Foreign donors largely sponsor the free drugs, it was gathered.
This is in sharp contrast to what had for long existed, where people feared that leprosy was an incurable, mutilating and contagious disease. Some communities in Nigeria had also erroneously accepted the disease to be caused by ‘spiritual attacks.’ Many adopt spiritual measures to find a remedy for the infection. This approach, as revealed by clinical findings, had further worsened patients’ condition.
“Leprosy is as old as the creation of the world but there is a new approach to treating the disease, unlike when there was no vaccine for it. But even as we speak, the most unfortunate thing is that those that are affected are not aware that the treatment is free.
“Early detection and treatment would stop deformity. Don’t forget that it is the visible deformity that causes discrimination and stigmatisation. Those deformities are irreversible even after the leprosy is cured. You will wonder why people who had suffered tuberculosis are not provided with colonies to live in.
“Sadly, most hospitals don’t have the requisite knowledge needed to detect the early signs of leprosy. There is the need for medical workers to be specially trained in detection of the ailment.
“Government at all levels needs to educate the people and remind us that leprosy is still with us and educate us on what to do to halt further spread. We must not fold our arms and allow the situation to become a national emergency. It is unfortunate that our government likes fire brigade approach,” Emekobum said.
On the recent discovery of new cases, she blamed Nigeria for going back to sleep, having announced in 1998 that it had achieved the World Health Organisation (WHO) target of one person to 10,000. She said government has since shifted attention to other communicable diseases at the expense of management of leprosy. She also blamed the country’s porous borders for the new cases.
States with high leprosy burden include Abia, Kebbi, Jigawa, Sokoto, Ondo, Lagos, Enugu, Oyo, Ogun and Cross River. Nigeria ranks third in Africa, following Ethiopia and Kenya.
Deputy national coordinator of the NGO, Mr. Olaniyi Peters, said he was concerned about how affected people could be reintegrated back into society. He maintained that correcting the myths and spreading the right information to all parts of the country could serve as a great method of achieving total eradication of leprosy.
“This idea or belief of establishing centres for them on the outskirts of town makes no meaning, especially in this age. The disease is not highly contagious as people think it to be, which is the reason they are kept far away from the cities.”
According to Peters, there were people living among the populace who were unaware that they suffered from leprosy. He said that was more dangerous because such ignorant patients were not on any line of treatment, and could quickly spread the ailment.
Revealing that it might take up to five or 10 years in some cases for the symptoms to fully manifest, Peters said one could only contract the disease if one comes into close and repeated contact with nose and mouth droplets from someone with untreated leprosy.
It has been discovered by research that children are more likely to get leprosy than adults.
“There is this case we discovered in Ijebu-Ode in Ogun. The young man operates a barber’s salon but he was living with the disease. We later found out that he started treatment and stopped when he was yet to get cure. Perhaps he was ashamed to continue because of the stigma associated with it.
“The basic thing is, once leprosy is discovered on time and the patient presents himself or herself at a designated medical facility, he or she will be treated and it will not lead to any form of deformity,” he said.
On her part, the national coordinator said the fact that the infection takes a longer time to incubate before it begins to manifest poses a great challenge. She said that was the reason most patents were unable to trace or even recollect how or where they got infected.
Having been trained by experts from Belgium on how to differentiate leprosy symptoms from mere itches, Peters said once you touch a part of your leg or hand and feel no sensation, then you need to go for diagnosis at a government medical centre in your local government area.
He further enlightened Nigerians that the main symptom of leprosy is disfiguring skin sores, lumps, or bumps that do not go away after several weeks or months. He added that the skin sores are usually pale in colour.
Lamenting how visitors who take gifts to the survivors at the centres distance themselves from the affected patients, Emekobum said such acts further demoralise the patients.
“That is why these people are usually shocked the way we relate with them anytime we visit. We play and dance with them. This is to make them feel that they are normal human beings. They were not born with leprosy because it is not hereditary.
“Some children who have been cured of leprosy still suffer discrimination even by their teachers in school. They don’t collect something from them just to avoid physical contact with the affected children. This is part of the campaign and reorientation we are out to spread; the need to defend their rights, especially of freedom of association. I can’t believe that when somebody is already cured, he or she is still being tortured by the society,” she said.
Today, at least 180,000 people worldwide are infected with leprosy, according to the World Health Organisation. Most of them are in Africa and Asia.
Leprosy is caused by a slow-growing type of bacteria called mycobacterium leprae (M. leprae). It is also known as Hansen’s disease, named after the scientist who discovered M. leprae in 1873.