‘A call to stop stigmatisation of people living with leprosy’
Aisha Ahmed was 16 years old when she noticed a little patch on her body, not knowing what it was she resulted to the usage of traditional herbs, however despite the usage, the patch will not go, rather her health condition began to get worse.
At first it was her fingernails that started removing, then her hands began to shrink inside. That was when the truth dawn on her, she has the dreaded disease “leprosy”.
“Everyone abandoned me, including my own kinsmen, nobody wanted to associate with me,” she said. “I resulted to begging on the street until someone was kind enough to bring me to this colony, where I was treated of the disease.”
Aisha further added, “I don’t have the disease anymore but there is no home to return to I am just waiting to die.”
Another story was told about Ruth whose parents came down with the disease. She said: “At first, I didn’t know my parent had the disease. All I noticed was that my father and mother started living separately. My two brothers and I were in boarding schools, during visiting days none of my parent would come to visit me. I feel so sad when I see other parent coming visit their children but mine would not come.
“This went on, until one day I confronted my dad to know what was happening then he told me the hard truth, he is a leper.”
Ruth, at a very tender age, started taking care of her father until his health condition deteriorated and later died. After the death of both parents, the uncles came and took away the two boys and wanted to marry her out to an elderly man who is not only mentally sick but has a daughter of her age.
Fortunately for Ruth, The Leprosy Mission Nigeria (TLM) stepped in and encouraged the girl to further her studies, after which she was employed to work in the mission and with this, she was able take care of her brothers and put them in schools.
Statistics have shown that globally, every 20 minute, a child is told he/she has leprosy. In Nigeria alone 3,500 people are diagnosed with leprosy every year with 25 per cent of sufferers living with disability. Experts say leprosy is an infectious disease that mainly affects the skin, peripheral nerves and mucous membrane of the upper respiratory tract.
It is caused by a germ called Mycobacterium leprae and is most common in places of poverty, dirty water, poor nutrition and low standards of living, it affects all age groups and both sexes but more common among males. The first outward sign is a patch on the skin associated with loss of feeling, peripheral nerves enlargement with or without damage.
Health professionals have said that the disease could be treated between 6-12month depending on the degree of illness. It was further revealed that the disease must have stayed in the body for 5years before deformity starts taking place. Health workers have often demanded that persons suffering from leprosy should be able to come forth and declare their condition.
Unfortunately with the kind of society people living with leprosy find themselves, where, first they are separated from the rest of the people, and later put in colonies scattered around the country, sufferers are left to live their lives in pains.
Health workers have further affirmed that the disease is not contagious and cannot be transmitted through sex, breastfeeding or handshakes, you can shake their hands, eat with them. Leprosy is not spread through the air by coughing and sneezing of a person with untreated leprosy.
Treated patients do not spread the disease. It is not spread from mother to child it is not hereditary. Experts have also said that 95 per cent of people have a natural immunity to leprosy adding that the disease is completely curable and the drugs are free of charge, in addition, patients can be treated from home and need not be isolated.
The Operations Manager The Leprosy Mission (TLM) Pius Ogbu Sunday during a recent media parley in Abuja explained that Leprosy is difficult to transmit; it requires long-term close and frequent contact with untreated patients.
Patients being treated do not transmit the disease and it can take up to 20 years for symptoms to appear that is, you can have leprosy and not know it. Report further said that untreated leprosy could cause progressive and permanent damage to the skin, nerves, limbs and eyes.
He added that the sick, old, very young, malnourished are susceptible, as the average healthy person combats the disease easily.
Although there is no vaccine for leprosy, but the BCG tuberculosis vaccine gives some protection against the disease. Doctors have recommended that the best way of preventing the spread of the disease is to begin treatment as soon as possible. However, if left untreated, it will cause damage to the nerves of the hands, feet, eyes and parts of the face.
This causes bent fingers, drop foot, and eye problems that can lead to blindness. Also because of nerve damage, people with leprosy do not feel pain and injure their hands and feet easily.
Ogbu further said that surgery and physiotherapy could be used to improve function and appearance, patients are taught the careful use of their hands and feet to prevent injury as nerve damage cannot be restored.
He, however, lamented the dilapidated state of Chanchaga Leprosy Hospital, in Minna Niger state, stressing the need for the reconstruction of the hospital as the current structure was built by the missionaries in the 60s. He pointed out that a lot of people are down with disabilities.
Ogbu observed: “The cloud to healing is stigmatization; the media is needed to change the attitude of people to them. The dream is to see them leave leprosy settlements to their homes, but the communities tend to reject them even from settling back home.
He said, “We are now using Goodwill Ambassadors to help ring the bell loud to the hearing of all. One of the factors that strengthen stigmatization is the terminology used like ‘leper’. It breaks the spirit of eradicating stigmatization,” Sunday lamented.
He noted that leprosy is a hiding disease that must be searched and found. Several of the new cases of leprosy reported in the country are largely due to success in active case findings. Not a few of the reported cases are found deep in the rural and remote settlements across the federation.
Because of poor awareness, persons affected by leprosy often seek treatment from the wrong places and spreading the disease without knowing. According to TLMN report, leprosy is spread through the air by coughing and sneezing of a person with untreated leprosy.
Reported cases of leprosy in Nigeria are only results of a few local governments areas so far covered by non-governmental organisations (NGOs) working with the various governments at addressing the scourge, unfortunately health system in the country heavily relies on NGOs and that explains why policy frameworks are not implemented. The nation is said rely on donor organisations to provide healthcare to it citizens.
He said a Bill has been drafted but no lawmaker has offered to take it to the floor of the National Assembly. According to him, only Kebbi State has so far shown serious commitment towards finding new cases of the disease with several states declining contributions.
Leprosy is one of the Neglected Tropical Diseases (NTD) in the world. The TLMN report also shows that out of the 3,087 new cases found in Nigeria in 2014, 90 percent are multi bacillary cases (MB) about 2,770, which were found late. They have more than 5 skin discoloration with loss of sensation. Also 317 are pauci bacillary cases (PB) about 10 percent, with less than 5 skin discoloration with loss of sensation.
Others are grade 2 disability cases of 411 persons about 13 percent and these are cases found after five years. 273 of the cases also are children making 9 percent, while female cases are 1,277 about 41 percent.
National Director, The Leprosy Mission (TLM) Dr. Udo, said stigmatization would naturally fade out if only people are detected on time and given the necessary medical attention. According to him, this will reduce physical disability. But the snag in the early detection theory stem from the fact that leprosy is not found unless sought for.
He said leprosy is very common where there is poverty and like any other infectious disease, poverty exposes people more to getting and contacting it. It is shrouded in some myth and falsehood and a lot of misconception associated with it.
In an attempt to dissuade the minds of people from some of the myths associated with leprosy, Udo explained: “The most common misconception is what people say that the spread of leprosy is associated with the bite of a cockroach, in fact, cockroach has nothing to do with leprosy, the only relationship one can say is that you find cockroaches more where there is poverty, around dirty environment, maybe that was why this insinuation came up at that time. There is strong correlation between poverty and cockroaches, but definitely cockroaches do not transmit leprosy.”
Despite the fact that Nigeria is a signatory to the United Nations general assembly principles and guidelines for the elimination of discrimination against persons affected by leprosy and their family members, not much has been put into action in this regard.
The country is expected to appropriate legislative, administrative and other measures to modify, repeal or abolish existing laws, regulations, policies, customs and practices that discriminate directly or indirectly against these persons affected by the disease and their family members. These include forceful isolation and segregation on the ground of leprosy.
He added that leprosy should be put in focus and all necessary machineries put in place to see to its complete eradication in Nigeria.
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