Leprosy robs many people of their health, happiness and human rights. People affected by leprosy have right to lead normal life like others. We need to bring healing, inclusion and dignity to the affected people and their families. Leprosy is caused by a germ. It is not a curse. It is not hereditary. Leprosy usually starts as a patch without sensation, no feeling of touch and pain and it can be anywhere on the body. It is important to see a doctor as soon as you notice any of these skin changes. Leprosy is curable with timely and proper treatment. Treatment is available for free in the country. If untreated, it may cause disability, said The Leprosy Mission International-Bangladesh (TLMI-B), adding that, about 3500 new leprosy cases are detected in recent years annually in Bangladesh.
Leprosy affects people’s lives in a number of ways. Most obviously, it can lead to physical disabilities that make it difficult to perform routine activities of daily living, to work or to earn an income. This may diminish the status of the affected person within their family and community and lead to psychosocial problems. Stigma resulting in discrimination and social exclusion can have a major impact on quality of life. Quality of life may be further affected where self-stigma causes people to attempt to hide their condition or to withdraw from normal social contacts, from income-earning activities or from their family responsibilities.
There have been amazing medical breakthroughs that enable us to help people, who have been disabled due to leprosy in a variety of ways. A clawed hand or foot-drop can often be restored with surgery and physiotherapy, though they can’t restore feeling. Surgery can also restore eyelid muscles so a person can blink again. To protect insensate feet and hands, people are encouraged to look after themselves by soaking their feet regularly, oiling their skin to make it softer and checking daily for any wounds. By following these self-care exercises, injury and further disability can be avoided. Customised mobility aids and special protective shoes are also available for people that need them.
A diagnosis of leprosy can also affect a person emotionally and economically. We should offer counselling and facilitate self-help groups and other opportunities to help people affected by leprosy to live life to the full.
There are challenges for eradication of the disease. These are: stigma over leprosy among people, lack of integrated health services, awareness campaign, training of health professionals on leprosy, quality health care including leprosy complications management, inadequate supply of multi-drug therapy (MDT) and shortage of manpower for detecting leprosy cases across the country, less importance to leprosy issue and inadequate budgetary allocation, and non-availability of health care facilities in nearby area of local people.
The hindrances need to be eliminated in the interest of a leprosy-free society.
We should provide quality care to leprosy patients. Reconstructive surgeries, physiotherapy, assistive devices and special footwear, treatment of ulcers and leprosy reactions, counselling and health education are all that should be ensured to enable people affected by leprosy to live independent and productive lives.
We should provide leprosy training to health workers, medical students and communities, so that knowledge of the disease reaches all levels of society.
Community-based rehabilitation (CBR) is recognized as the best practice in addressing the needs of people with disabilities, including those affected by leprosy.
The basic needs of all people, including people affected by leprosy, are the same – food, health, education, shelter, and so on. CBR facilitates access to basic needs, and at the same time promotes equal opportunities and equal rights. It is therefore a multisectoral strategy with some key principles to enable people with disabilities to participate in the whole range of human activities.
Micro-credit: a leprosy victim gets a small loan, either in cash or the form of livestock or a sewing machine or agricultural tools, which can be used to generate an income.
Self-help groups: leprosy and disability affected people form community groups, save money together, and build up mutual confidence and capacity to advocate for themselves.
Self-care groups: leprosy-affected people learn together how to prevent the development or worsening of disabilities, for example ulcer prevention and care.
It is needed to operate education schemes for those directly or indirectly affected by leprosy. The schemes should include:
Vocational Education Programmes, which include residential vocational training establishments and community-level skill-development programmes. It is needed to work with the affected families to improve their livelihoods so that they can afford to pay for their children’s education.
Advocacy
Stigma towards leprosy-affected and disabled people is still widespread due to lack of knowledge among people. People with leprosy find themselves rejected and isolated.
We need to advocate for the rights of the affected people and to reduce the physical and social barriers that they face. We also should promote self-advocacy– helping leprosy victims to know their rights, improve their self-confidence and be empowered to lobby for change.
Information, Education & Communication activities, using the TV, Radio, print media and other mass/group/individual communication, can be launched to create awareness. This may facilitate increased detection of early cases, better treatment compliance and reduced stigma attached to the disease.
Now, about 35,000 people in our country live with leprosy-related disability, which hinder their participation in society on an equal basis with others.
They face difficulties accessing health care, education, and employment opportunities, and are therefore likely to experience worse poverty than non-disabled people. Many do not receive the disability-related services that they require, and experience exclusion from everyday life activities.
We should work to break down barriers for people with disabilities (PWDs) in all aspects of life. Adoption of the following approach can be effective:
Mainstreaming, which means working to identify and overcome the barriers in society that persons with leprosy and disabilities face, such as negative attitudes that lead to social exclusion.
If PWDs are able to participate in poverty reduction and development programmes, the vicious cycle of poverty and disability could be broken.
Livelihood and vocational trainings are needed to enable PWDs to access livelihood programmes in their communities. Training of PWDs should be arranged to give them skills to break down barriers and stand up for their rights; and of governments and other organisations to ensure they include PWDs in their programmes.
‘Leave No One Behind’ is one of the key messages of the UN Sustainable Development Goals (SDGs) 2015-2030. The SDGs’ aim is that no person is denied universal human rights and basic economic opportunities.
Over 165 countries have ratified the UN Convention on the Rights of Persons with Disabilities (UNCRPD). PWDs have a right to access health services, education and employment. The UN Convention needs to be put into practice in our country.
We should work to see the leprosy victims realising their worth and empowered to overcome challenges. It is needed to influence change in attitudes so that communities no longer stigmatise or discriminate against people affected by leprosy or disability.
Leprosy would be eradicated and the lives of the victims be transformed if we can take necessary steps, mentioned in this article, and implement those properly.
The writer is a journalist