Leprosy -- the most stigmatised disease

Leprosy is not only a health problem in our country but also the most stigmatised disease. Even health professionals and family members avoid the leprosy victims.   
Take the case of Asma Khatun (not real name), resident of Gaibandha, has three daughters and one son. In 1986, when she was pregnant with her younger daughter she was diagnosed with leprosy. After the birth of her younger daughter, her husband went away with the three other children and married again. She was despised by people around her. As she failed to take treatment, she turned disabled.
She is one of the victims of stigma. Leprosy is curable with timely treatment, but leprosy victims continue to face stigma, which is hampering leprosy elimination programme.  
Many people believe that this disease is due to misdeeds in their present life or in a previous incarnation, witchcraft, evil spirits or as a punishment by God. In fact, leprosy is a chronic infectious disease caused by a specific small germ 'Mycobacterium leprae'. It mostly affects the peripheral nerves and the skin.
According to The Leprosy Mission International-Bangladesh (TLMI-B), some 209,543 new leprosy cases were detected in Bangladesh from 1985 till 2014. Most of them were cured with regular treatment while 11 per cent of them became disabled as they failed to take treatment timely. The disease is completely curable but negligence, caused by lack of awareness, brought the sufferings.         
Two main types of this disease are paucibacillary (PB) leprosy and multibacillary leprosy (MB). Persons suffering from MB leprosy harbour very large numbers of leprosy bacilli in the body and constitute the principal source of infection. PB leprosy is relatively harmless and usually non-infectious, since the patient harbours relatively few bacilli, said doctors.
M. leprae comes out from untreated MB patient at the time of sneezing and coughing. It spreads as droplet infection through air and enters healthy human beings through respiratory system. Then there is a fight between leprosy bacilli and the body immunity. When the body immunity is weak enough, only then the bacteria survive and cause the disease, they said.
"The best way to prevent the spread of leprosy is the early diagnosis and treatment of people who are infected. A cure is assured in all cases, provided regular treatment is taken for the required period", said Dr Safir Uddin Ahmed, Deputy Programme Manager, Leprosy (Training and Logistic), DGHS, Mohakhali.    
Treatment of leprosy is free and available at all upazila health complexes. Timely and regular treatment is required, because untreated leprosy can cause progressive and permanent damage to the skin, nerves, limbs and eyes, he said.
Due to the lack of awareness and the stigma that surrounds the disease, some people delay seeking help and are diagnosed too late to prevent life-changing disabilities.
Over the centuries, the stigma visited upon people affected by leprosy represents one of the most pervasive forms of social injustice suffered by any one group of human beings.
Discovery of M leprae by Hanson in 1873 transformed the belief of scientific community about the disease. However, this disease strikes false fear in the societies as mutilating, disfiguring, contagious and incurable disease.
As there was no known remedy for the disease in the earlier days, the viciousness of the disease, disfigurement and disability caused by the disease resulting in making the affected persons suffer heavily, led to a number of myths, misconceptions, apprehensions and inhibitions in the minds of people. This resulted into developing such a high degree of stigma against the disease that the community wanted to avoid all contact with such persons. The leprosy affected persons were forced to leave their home and live in segregated areas.
Knowing what is likely to happen to them once a diagnosis of leprosy is made, many sufferers try to hide their condition as long as possible, meaning that by the time they do come forward for medical treatment, the disease is often well advanced. This can mean they are unable to earn a living as no-one will employ them; they live lives of destitution and poverty.
At different times and places, the way leprosy patients and their families have been treated, has constituted a serious violation of their human rights, stripping them of their dignity in the process.
"We should work to break this chain of suffering by raising public awareness about leprosy through the mass media, village and religious leaders, cultural and advocacy programs and health education in schools and communities", said Jiptha Boiragee, programme support coordinator of TLMI-B.
If people are more informed about the true nature of leprosy - that it is not highly contagious and that it can be treated successfully -- then misunderstanding about the disease and the fear it evokes will be greatly reduced. This in turn will lead to greater acceptance of people affected with leprosy, enabling them to earn a living and live dignified, fulfilled lives as participating members of society.
By addressing the fear and stigma of leprosy, and the consequences of that stigma, we can enable a fullness of life for people who have been affected by leprosy. Public education and community awareness are crucial to encourage individuals with leprosy and their families to undergo evaluation and treatment.
Folk artiste groups and performing artistes like those in theatres have large followers and can be strong partners in spreading the positive messages. Religious leaders such as Imams of mosques can spread the messages of leprosy. They are a potential force and religious places can be a platform to bring a social change.
Using the powerful mass media, we can control leprosy by raising social awareness, providing assistance to govt and NGOs, early diagnosis and treatment of leprosy patients, rehabilitation of leprosy patients in society and establishing social rights and restoring human dignity for the victims.
Appropriate messages should be developed and disseminated. Information on basic facts of leprosy should be disseminated to remove misconception and thereby remove stigma, prevent discrimination against and displacement of patients from their job, home, family, education and community, promote acceptance of patients in the community. It is needed to promote voluntary reporting by increasing community awareness regarding early signs of leprosy, curability with treatment and availability of treatment free of cost, importance of early case detection and by providing efficient diagnostic and treatment services to all leprosy patients.
It is imperative to break the barrier between persons affected by leprosy and the rest of the society, by appealing to people's emotions and their ability to empathise with those they feared and shunned.
Article 1 of the Universal Declaration of Human Rights states: "All human beings are born free and equal in dignity and rights." This includes every person affected by leprosy.
Empowerment of persons with leprosy is key to success in reducing stigma and raising their self-esteem. Educating the leaders and community influencers may affect their decision and allow appropriate information to filter down. Awareness can empower the persons with leprosy, physical and socioeconomic rehabilitation, and positive attitude of health professionals, which can contribute significantly in the reduction of stigma due to leprosy.
Besides, it is needed to highlight the integration of the efforts of the government and NGOs, expansion of treatment services so that all leprosy persons get appropriate treatment, foster partnership with all stakeholders and extend all sorts of cooperation for maintenance of livelihood of the leprosy victims and their family members and ensure that all existing and new cases are provided with appropriate management of complication and aftercare services.  

The writer, a journalist, can be reached at [email protected]