By Ciara Naughton
Ciara is participating in the Silver Global Citizen Award. This is the second of her Global Blogs from India.
Leprosy, also known as Hansen’s Disease or Kusht in most Indian languages, is one of the oldest communicable diseases in the world with some reports dating as far back as 600BC. For example, written accounts on a homoeopathic remedy utilised in the treatment of leprosy in India can be dated back to 400BC. After many centuries, research by G.H. Armauer Hansen (hence why leprosy is also known as Hansen’s Disease) in 1873 lead to the discovery of the etiology (cause of the disease) of leprosy. Leprosy is caused by a bacterium, Mycobacterium Leprae, which multiplies very slowly. It has an incubation period – where the disease is present but not active – of up to 5 years. However, symptoms can take up to 20 years to appear. Furthermore, leprosy was found to be an infectious disease – only infectious to those with a low immune system – that primarily affects the skin, superficial nerves and respiratory mucosa. Symptoms range from hypo-pigmented patches of skin (lack of pigmentation of the skin), loss of sensation in affected areas or deformities of upper and lower limbs.
Did you know? The word Leprosy originates from the Latin word lepros, which means defilement – i.e. indicating the deformities that can happen if leprosy is not treated
Fortunately for Ireland and most European countries; the demographics of this disease has greatly changed over the last number of decades. No official cases of leprosy were reported in Ireland between 1981 and 2012. However, in 2012, two cases of leprosy were confirmed but both cases were said to be contracted outside of Ireland.
Did you know? 95% of people are believed to be naturally immune to leprosy which is why many now refer to leprosy as the “least contagious communicable disease”
Conversely, while Ireland has successfully eliminated leprosy, the same cannot be said for India. In 2005, the World Health Organisation and Indian Government published that leprosy was eliminated in India – elimination meaning that diagnosis of Leprosy was ‘<1 : 10,000’ (less than 1 per 10,000 of the population). However, recent figures have indicated that each year 130,000 Indian people are diagnosed with leprosy and 130,000 undiagnosed cases – this figure is larger than all other countries diagnoses of leprosy added together. However, these skewed figures have led to the redistribution of funds (previously dedicated to leprosy), back into the general health system. Leprosy charities have also met the same fate with donations falling significantly; and some projects have even had to close down permanently.
Furthermore, while funding is being revoked so is the focus around dispelling the stigma associated with leprosy. It wasn’t that long ago – less than a century – when leprosy was a common illness in the Irish healthcare system and the stigmatization of leprosy affected patients existed. Like India, many Irish people believed that people contracted leprosy after committing a sin and the leprosy was their punishment.
Stigma is a major problem encountered by leprosy affected patients in India. Campaigns were continuously carried out in many of the big cities in India such as Calcutta, Mumbai, etc. However, despite all this media attention, a research study portrayed that only 30% of individuals in one community claimed a high knowledge about leprosy and also had a positive attitude towards people affected with leprosy. Yet, from my experience in Ireland as a nurse, it is easy to see why leprosy is still stigmatised in India. For many people, it is hard to dispel myths, attitudes and conceptions about leprosy that they have known all their life. Generally, they can only be changed after first-hand experience with leprosy – either they themselves or someone close to them having contracted leprosy or working with people with leprosy affected people. However, family, friends and neighbours normally disown a leprosy affected patient or someone working with them. Unfortunately I saw many harrowing situations when I was in India portraying the severity of stigma experienced by many people affected by leprosy.
For example, Anna (Pseudonym) originally from Calcutta lost her job and her home and was abandoned by her family once they discovered that she had leprosy. She ended up in the leprosy clinic in Sumanahalli, but because she was from Calcutta, she spoke a different dialect to those in Sumanahalli. She was completely isolated, unable to communicate the smallest of problems such as pain. This for me, had to be one of the hardest aspects of the placement; they are left completely marginalised from society. Therefore, it is evident that someone living with leprosy is stigmatized, not only physically but mentally, socially, economically and spiritually. Fortunately, I was able to outweigh the negatives; I realised that Anna was now in a centre that treated her leprosy, provided her with shelter, food, warmth and most importantly love!
Conversely, stigma was not just limited to families, friends and neighbours of leprosy affected patients; it also existed in Acts such as the Hindi Adoption and Maintenance Act 1956, which allows for the separation of a couple if the husband had leprosy. In Sumanahalli, they tried to limit this by building houses for the families of leprosy affected patients. Thereby, they could remain near to their family while receiving treatment and reducing the marginalisation they experienced. On the other hand, I also saw discrimination in society, especially in the education system. I visited the school in Sumanahalli and also another school not far away. The difference in perspectives on leprosy was phenomenal. The one thing that struck me was the amount of education on leprosy in the school in Sumanahalli. The kids knew how to identify leprosy, what caused it, etc. thereby eliminating the stigma and discrimination associated with it. On the contrary, the other school clearly lacked education on leprosy as they used derogatory terms for leprosy affected people and for Sumanahalli. From a personal point of view as a healthcare professional, it was difficult to witness the volunteer doctor blatantly stigmatise the patients in the clinic. On his weekly visit, he would avoid the patients. It was hard to believe that a healthcare professional was fearful of these patients and of contracting leprosy.
In conclusion, leprosy is a communicable disease mainly affecting the skin, lungs, nerves and eyes of over 125,000 Indians every year. Furthermore, India, accounts for the world’s largest population of leprosy affected patients. While, leprosy has existed for thousands of centuries, it still remains a major problem in India – stigma is one of the biggest issues that leprosy affected patients face today. Many charities are still focused on tackling this stigma, and will continue educating rural and urban areas about leprosy thus helping reduce stigma; but also helping in the early recognition and treatment of leprosy. This will lead to early diagnosis and treatment of leprosy affected patients, reducing the number and severity of deformities.