Leprosy is one of the most ancient diseases known to humankind. Despite being declared Leprosy-free by WHO in 2005, India has regained the title Leprosy Capital of the World. From a national prevalence rate of 0.72 per 10,000 people in 2005, India is now home to 60% of the new global leprosy cases reported since 2016.
Leprosy, a disease of the skin and nerves, caused by Mycobacterium leprae, is a leading cause of permanent physical disability. Timely diagnosis and treatment before the nerve damage sets in is the most effective way of preventing disability. Multi-Drug Therapy (MDT), introduced by the WHO in 1980s, has been the most effective treatment of this disease. It was the adoption of MDT by the Govt. of India which reduced its status from an epidemic to a manageable number, eventually making India Leprosy-free in 2005.
From the inception, GLRA India successfully engaged in leprosy control work in association with the National Leprosy Elimination/Eradication programme through hundreds of grass-root level NGOs, and with established leprosy care hospitals across the country. Over the last five plus decades, we managed to diagnose, treat, and cure about 2.5 million people through 300 plus projects besides providing technical support to several state leprosy programs.
NEED FOR REHABILITATION
Despite being curable, leprosy leaves long-lasting physical deformities, and more disturbing than these deformities are the mental scars the disease leaves. The mutilating, disfiguring and contagious nature of the disease causes social ostracization, stigmatization, discrimination of the affected individuals. The limb-deformities often leave the individuals unemployable, and thus financially dependent, adding further to the mental/social burden.
For those suffering from leprosy, medical care is not the only one of significance, but also social reintegration and rehabilitation, to ensure sound mental health and to make the affected feel productive. It is worth noting that despite the best efforts by Global and Indian agencies in prevention and treatment of leprosy cases, little attention has been given to social rehabilitation of leprosy-affected post-successful treatment. This could be attributed to the epidemic nature of the disease, making it an urgent need to address prevention and treatment before anything else. Nevertheless, at GLRA-India, we make social reintegration for the affected individuals a priority along with their medical rehabilitation. GLRA India is a pioneer in social rehabilitation and over the last 5 decades, our efforts significantly contributed to the lives of 272000 affected people or to their family members.
WHAT CAN BE DONE?
For decades, the focus of leprosy eradication programmes, both nationally and internationally, has been limited to prevention and treatment. While MDT has been pivotal in the successful treatment, the social rehabilitation has been an ignored frontier. We have always believed that the social acceptance of the leprosy-affected needs as much work as their medical rehabilitation, ensuring that such individuals are not lost to the disease emotionally, and despite being treated successfully, do not become mentally/emotionally unfit to join community, participatory life or the regular workforce again.
Another area that deserves importance is Education and Awareness. In the work of several decades, it has been found that certain groups of population are highly susceptible towards the disease. It is, therefore, important that such groups, in addition to all others, be made aware of the disease and its curable and preventive nature. In the same context, education of the community leaders and key stakeholders is also highly desirable to reduce the stigma and discrimination
Another aspect of leprosy management is the side-effects the medication is known to have, like discoloration of skin, which can drive the patients to abandon treatment midway. Health education to share such information also becomes important in successful treatment of the disease.
In the backdrop of these aspects, we have always ensured not only identification and steering of affected individual towards medical treatment but have also ensured that the community and caregivers receive health education, and post-treatment the individuals are restored back into the community to a life of dignity and self-reliance. Additionally, economic support in the form of education or means of skill development and livelihood, is provided to the dependents of the affected to safeguard future interests.
Leprosy-affected individuals who developed disabilities go through this surgery (if needed) to have the function and form of the deformed limbs restored. The surgery also prevents any further disability. As a part of our care and rehabilitation program for the affected, we have facilitated reconstructive surgery for more than 46550 people across India.