Leprosy: Saga of an eternal discrimination

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Leprosy is an infection, affecting skin and the nerves. We discovered organism causing this infection, Mycobacterium leprae in 1873, nine years before its more famous counterpart Mycobacterium tuberculosis. Saga of discrimination and leprosy is eternal. Society discriminated against sufferers of this disease, and scientific community against Dr Gerhard Hansen – a Norwegian Physician who discovered the bug.

Leprosy bug is slow to grow. It doubles in two weeks, as compared to twenty hours for tuberculosis bug, and twenty minutes for most other bacteria. Like its bug, funding support for leprosy is also slow, another discrimination this disease lives with. In order to reduce the perception of stigma and discrimination, we renamed it as “Hansen’s disease“.

Disfiguring disease

We know leprosy since ancient times, as “kushta“or eating away in India, and as “tazaraat” in Israel. Modern dermatologists however believe that ancient descriptions of the disease overlap with various other conditions. Ancient civilisations believed that Leprosy was a consequence of sin. Bible has many references to its disfigurement. Disfigurement in leprosy is persistent. Bible however has a reference to Jesus’s touch, that entirely cured Leprosy in a sufferer.

Historic texts have described disfigurement due to Leprosy. Lesions appear on the surface of the skin, including face. These lesions grow onto small nodules and spread across the skin. Sufferers loose their eyebrows, eye lashes, also the prominence of their nasal bridge. We know this appearance as “Leonine or lion-like facies“. Over-time fingers would resorb and fall, and so would toes. What could this malady be, if not a sin ?

Keep them away – in a Leper colony

Throughout history, sufferers of the disease were forcibly separated, isolated in leper colonies. Effectively, they were shunned away from those who had not yet been punished for their sins. Historic texts describe leper colonies from the ancient times. Such leper colonies would be at the edge of a village or a town. Medieval christianity also gave an alternate glorifying narrative. “Lepers are punished for their sins, while on earth. Their next abode is heaven. Charity for lepers, and making more leprosy homes or colonies hence is a virtue.”

Murilidhar Devidas Amte, popularly known as Baba Amte, was born in a small town of Hinganghat, Wardha in 1914. Lawyer by profession, and a follower of Mahatma Gandhi, in 1949 he established an Ashram (or a home) for leprosy patients abandoned by their families. Later he and his entire family devoted themselves to social causes.

So for centuries, patients would spend their entire lives in Leper colonies. They were however allowed to come out and beg. There are many current as well as historic images of such leper beggars. Leper homes or colonies kept the sufferers away from public eye. As Europeans expanded their empire, they established such homes as a missionary activity. Leprosy mission in India, was one such organization, established in 1874 by Wellesley Bailey. Local philanthropists also chipped in.

End of the Leprosy homes

Change in societal norms, problems with institutionalised leprosy care has made these leprosy homes a thing of the past. Over the years conditions in most such homes also became deplorable. Further, discriminated, and shunned by the society, sufferers of the disease were often forced into these colonies. It was a Quarantine for life. Focus moved away from specialised homes, to providing treatment in the community itself.

Twists in discovery of cause: Dr Gerhard Hansen

Dr Gerhard Hansen, was trained as a physician in Norway. He started his career from a Leprosy institute (previously a leper home) in Bergen, Norway in 1868. He worked under Danielssen, who had written first medical monograph on Leprosy in 1847- Om Spedalskhed. Danielssen firmly believed that Leprosy is not infectious. He had repeatedly inoculated himself and his staff with extracts from leprae lesions. No one had ever developed the disease by inoculation. Many years later, Hansen would marry Danielssen’s daughter.

Hansen obtained a scholarship in 1870 to study histopathology in Vienna. On his return, he tried various stains on leprae nodules, finally succeeding in demonstrating rod-shaped structures in 1873. He even wrote a monograph, but it was in a Norwegian magazine (Norsk Magazin). Hansen got a promotion and contributed to Norwegian legislation in Leprosy two years later.

In 1879, Albert Neisser (an associate of Robert Koch and better associated with gonorrhoea bug), came on a visit to Bergen. He obtained some tissue material from Hansen, took it back to Vienna. He used a better stain, and announced discovery of Leprosy Bacillus in 1880. Hansen fought back, and claimed his discovery. The honour was restored back to him only in 1897, at the Berlin Leprosy congress.

The bug fails to grow

Meanwhile, Hansen was having his own set of problems. He could not yet show that leprosy bug he had discovered was infectious. Every attempt to grow the bug, or inoculate it in human or animals was met with failure. In 1879, he made a mistake. He unsuccessfully attempted inoculation of the bug over conjunctiva of a patient, without her consent. Hansen was found guilty, and had to loose his position as a physician. Till date, unlike any other infectious agent, leprosy bug cannot be grown in pure culture.

Quest for a cure

Before 1950, leprosy was treated with oil from the seeds of plant Hydnocarpus wightianus (Chaulmoogra). Physicians would either apply this oil, or even inject it under the skin. Some others would recommend swallowing. Cure for this disease came in 1950s, when Dr RG Cochrane advocated use of dapsone pills. The drug became a treatment of choice. Finally leprosy was deemed curable.

By 1970s we knew that multiple drugs – Dapsone, and Clofazimine are better than one. We saw introduction of Rifampicin in 1981-82, as the drug was added to WHO treatment regimen. In 1993-94 India launched “Leprosy eradication“. In an attempt to look good, we achieved statistical elimination in 2005. According to WHO we globally see about 70,000 new leprosy cases every year. India registers 50% of all new cases worldwide.

World Leprosy Day is observed every year on the last Sunday of January. In India, it is observed on 30^th January every year, coinciding with the death anniversary of Mahatma Gandhi. We chose this date in 1954, as a tribute to Mahatma Gandhi.