Leprosy is caused by a germ. Hence it can be transmitted from one person to another. A majority of people have a natural resistance to the germ and hence do not develop the disease.
Leprosy is also a disease of the skin and nerves. This is because in the cells, leprosy germs grow and cause the disease. In the skin, pale coloured patches develop. These patches have no touch sensation.
With damage in the nerves, sensation is lost in the hands and feet. People tend not to take precautions to prevent damage because they feel nothing. This in turn results in deformities. The presence of visible deformities results in stigmatisation and ostracisation.
A study conducted in 2011 explored the impact of stigma on the lives of people who have health problems such as leprosy, and identified four areas of impact:
These domains are interconnected and manifest themselves in different degrees, at different moments, and in different contexts.
Emotions cover feelings such as fear, grief, depression, shame, guilt, anxiety, low self-esteem, hopelessness and anger, or inability to express such feelings.
The second category covers negative and pessimistic thoughts and beliefs about self, the world and the future.
The third, behaviour, is the result of emotions and thoughts that influence the way people react, resulting in lack of confidence, avoidance, withdrawal from social life, and self-isolation.
Relationships depend on the strength of a person’s social support network and the attitudes of people in the network. The impact could be rejection, forced isolation and restricted social participation.
This same study showed how People Affected by Leprosy (PALs) are concerned about negative comments from others because of their skin patches, physical deformity, and disabilities. They and their families and community regard their appearance as negative, labelling it and marking them with it.
This has a negative impact on their lives, limiting and restricting their social participation, making it difficult to assert their rights and satisfy their basic needs.
C M Agarwal, who heads the Indian government’s leprosy programme, believes the number of children being diagnosed with the disease was worrying.
“Because we declared India to be leprosy-free in 2005, it led to complacency. Other diseases took priority,” he told a news agency recently. “The reporting of child cases suggests active and recent transmissions.”
India stopped conducting door-to-door searches for suspected patients 10 years ago, a move Dr Agarwal believes exposed families to the risk of new infections.
The World Health Organisation allows governments to declare that leprosy is no longer a public health risk if the prevalence rate falls below one case per 10,000 people.
That was achieved in India in 2005. But while the national prevalence rate remains below the threshold, some areas have now exceeded it.
In 2013-14, 126,913 new leprosy cases were reported across the country, including 12,043 children, according to government figures. The government has said it wants to eliminate the disease from India completely in the next 10 years, and has made it a formal priority that no children should be left with visible deformities.
It is well documented that deformity is the result of inflammation in the nerves (neuritis) which occurs during reaction. It is also well documented that reaction can occur before, during and much after the treatment, and the patient has been declared as cured.
Prevention of deformity is the most important factor in addressing the stigma related to leprosy. All the staff, more so the general health staff need, to be geared to tackle the issue. Proper, timely and adequate treatment for neuritis can prevent deformity, the cause of ostracisation.
For decades, healthcare professionals have been involved in information, education and communication ( IEC) activities. This is another area that needs to be strengthened. Distributing pamphlets, painting slogans and taking out jathas are common methods.
In many areas self-help groups have been formed. They are intended to encourage micro financing, and consist of homogenous sections. If the group is made of leprosy-affected people, they could also act as a forum to share the burdens of tackling deformity and the resulting ostracisation.