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Thursday, July 21, 2011

The fearsome face of leprosy in India


Date: 07/21/2011


Being fond of superlatives, I use horrifying and terrifying quite flippantly and usually in a comic context. After meeting a patient with leprosy in one of the community health screenings, I decided to google the following term: “Leprosy pictures”. When I describe those pictures as horrifying and terrifying, I don’t believe that is an overstatement at all and humour is very far from my mind. As I browsed through the pictures of the faces and bodies marred by leprosy, they seemed a hybrid between a monstrous phantasm and a human. Indeed, the disfigurment of the face due to leprosy is described as leonine facies (lion face). Seeing this made the aetiology of the stigma and the mistreatment associated with leprosy perfectly clear to me. It was fear.  

A quick internet search about leprosy produced this article: http://southasia.oneworld.net/Article/laws-in-india-criminalise-leprosy

It contained a list of the anachronistic laws in the Indian constitution related to leprosy. Most of them date from the British Raj when leprosy was considered highly communicable and incurable. In fact, leprosy is immensely treatable and is not easy to contract since about 95% of us are naturally immune to Mycobacterium leprae, the bacterium that causes leprosy. In fact, 90% of the cases of leprosy in India are tuberculoid which is not as infectious as the infamous lepromatous leprosy. I’m still in the process of checking whether these laws are  in effect or not.The key points are as follows. Leprosy patients in India cannot:
  1. Get a driver’s licence.
  2. Ride in a train.
  3. Compete in local elections.
Moreover, numerous marriage laws pertaining to hindus and muslims consider the contraction of leprosy as just grounds for the dissolution of marriage. Considering the fact that leprosy tends to be a disease of the poor and the abandoned, these laws are by the wealthy against the marginalised poor, by the majority against a defenceless and very ill minority. Of course, these legal wrongs are not the worst problems for patients of this ancient disease. 
The social stigma is immense and even some very highly educated Indians I’ve talked to seem to be fairly ignorant about leprosy and its mode of spread. Indeed, even people who had leprosy as children and were cured without any deformity accruing are seen with suspicion and their job prospects suffer.
 (picture courtesy Wikipedia)


This is a picture of Mahatma Gandhi massaging the legs of a brahmin who had contracted Leprosy and was considered an outcast/untouchable as a consequence. The Mahatma took him in and changed his bandages personally in an attempt to de-stigmatize the disease. Why is it, then, that the people who call him Bapu (father) still force leprosy patients to live in isolated colonies reminiscent of the dark ages?


From the little bit of reading I’ve done so far, it seems, experts are quite unsure about India ever being able to eradicate leprosy. There are some scientific hypotheses behind this. My personal hypothesis for the continued survival of the disease in India is simple: fear. The fear of disfigurement leads people to banish leprosy patients from society and make them live in isolated communities instead of initiating prompt treatment. These poor people do not get treated and their leprosy progresses to the lepromatous stage at which they start losing limbs and getting disfigured. It is this scary face of leprosy that society sees and sustains the fear of the disease. Do you see the vicious cycle? I’ll write more once I’ve ascertained the status of the laws and visited the Schieffelin Leprosy Research and Training Centre at karigiri which is quite close to CMC. 
When asked what separates us from “lower” animals, the most frequent answer is reason. It is the absence of good reasoning that creates a milieu conducive to fear. Good reasoning requires true premises. As doctors, medical students, economists, and educated persons, we have the potential to be public intellectuals! It is our role, as those in the know, to provide our fellow citizens with good, accurate, and up-to-date information so that their premises can be better educated, their actions and laws less inspired by fear-- more human and more humane. 

9 comments:

  1. Great blog post, you've captured a lot of the issues very well indeed. I would ask you, however, to avoid use of the term 'leper', which labels a person with the disease. The term 'person affected by leprosy' is the prefer English language term, and is good in that it also brings in the family members who can be affected - for example children of people who have or have had leprosy can have problems getting access to education. For a good explanation of the problems with the 'l' word, see here: http://www.leprosymission.org.uk/youth/leper.aspx

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  2. Thanks for the comment. I believe Brazil has invented a new word: "Hansenian" to reduce stigma. I did hesitate before writing the "l word". Part of the reason I left it in was to show how barbaric and primitive the thought process behind sending them there is in the first place. A society that has the knowledge and sensitivity to use "person affected by leprosy" or "hansenians" would not do what the Indian society is currently doing.

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  3. I made the changes after reading your link. Thanks, shotlandka.

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  5. Hi, Love your blog. I'm Sian Arulanantham, Head of Programmes at The Leprosy Mission. We are working with The Leprosy Mission Trust India to repeal anti-leprosy laws. If you want more information contact Dr Sadanand Bag. sadanand.bag@tlmindia.org - feel free to mention my name.

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  6. Thank you, Sian. I emailed Dr. Bag today. A friend, who is a law student, and I have been considering forming an organization to raise funds and awareness in America to help the process of repealing the laws. Have you any suggestions for me? Feel free to email me at pranay@virginia.edu.

    Best,
    Pranay

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  7. Thanks Pranay, and glad you'll be in touch with Dr Bag, The Leprosy Mission Trust India are doing great work in this area, as are our colleagues in other countries. I work for The Leprosy Mission Scotland!

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