The first stop on our tour of health facilities in India was a hospital and rehabilitation home for lepers. I was pleasantly surprised, being interested in infectious diseases and specifically mycobacteria. Still, it was unexpected. For me leprosy’s associations included Biblical curses, historical leper colonies, and a degree of social fragmentation from stigma that I hoped had vanished from society. In my mind’s eye flashed a scene from a 2004 movie – two young Latino men, one a medical student, the other a chemist, cross the enormous Amazon River to visit lepers living in isolation on the other side. The young medical student reaches out to shake the deformed hand of one patient to his great surprise (this is “Motorcycle Diaries” if you are wondering; the med student is the future Che Guevara).
I knew from past research that leprosy had likely reached the West during the Roman Empire when many diseases spread from its Eastern provinces. Then, it was known as “elephantiasis,” although that term likely would’ve encompassed other skin conditions as well. While very prevalent in Europe in the 12th and 13th centuries, by the 16th it had become virtually absent. Some historians propose that the centuries-long epidemic of tuberculosis, which peaked in the late 18th or early 19th century began sometime around the 15th or 16th century and may have contributed to the decline of leprosy. Archaeological evidence tenuously supports this. For a while it was believed that since both leprosy and tuberculosis are caused by mycobacteria, a significant level of cross-immunity existed between them that allowed latent tuberculosis to be protective of contracting leprosy, or vice versa. However, at places such as the Dakleh Oasis in Egypt, ancient remains have revealed the bone lesions of both leprosy and tuberculosis. This has been confirmed by ancient DNA analysis showing the DNA of both Mycobacterum tuberculosis and Mycobacterium leprae in the same individuals. It is now thought that, rather than inducing protection, one infection weakens the immune system, allowing the other to take hold in the body. This waning immunity would have been exacerbated by poor nutrition and living conditions when lepers were forced to live on the fringes of society due to stigma and fear of contagion. Specifically, the compromised cell-mediated immunity in multi-bacillary leprosy would have led to reactivation of latent tuberculosis or superinfection with TB. The historical rise of tuberculosis could then very well explain leprosy’s decline in Europe.
But leprosy is still a significant problem in India. Our contact, Dr. Reddy, had explained that while only 2-5% of the population is genetically susceptible to leprosy, Mycobacterium leprae is “everywhere” in India, allowing many opportunities for droplets to be inhaled (the mechanism of infection). While spread via skin contact is theoretically possible, this mechanism of spread is thought to be extremely rare. Still, leprosy is a disfiguring illness that scares people. Peripheral nerves are affected, leading to skin anesthesia and subsequent ulcers. Loss of motor strength compromises muscle activity. The disease also leads to an inability to close the eyelid (“lagophthalmos”) which can lead to what might seem an unnerving stare. Bacteria collect in the nose, leading to collapse of the nasal bridge. Having a leonine facies means that lepers still face stigma.
Sivananda is a wonderful center in many ways. Here providers treat the disease of leprosy with antibiotics and its complications by surgery to restore hand function. Many of the latter patients are children and young adults. But Sivananda also provides stigmatized individuals with a community in which to live. The extensive grounds held a veritable village devoted to lepers and their families. Not counting those patients who come from afar for treatment at the main building, there are some 400 individuals living there, including about 150 who are elderly or infirm and will be there until their deaths. Sadly, most of these homes are being phased out (presumably due to funding issues) and the lepers will have to return to the communities from which they came. I wonder what sort of reception they will receive. But at least they will have the comfort of knowing that, should they need further care, Sivananda is there waiting for them.