The Leprosy Ward
The battle against stigma in India
Leprosy has afflicted humanity for millennia, with the earliest known evidence of the disease found on a 4000 year-old skeleton unearthed in India.
In 2005, the government of India declared leprosy eliminated:
‘...the country achieved the goal of elimination of leprosy as a public health problem, defined as less than 1 case per 10,000 population, at the National Level in the month of December, 2005’
The World Health Organization reported 166,445 new leprosy cases in India in 2012, a staggering 71% of cases recorded globally. Far from eliminated by any definition, especially considering the devastating physical and social effects of the disease.
Leprosy is a chronic bacterial infection. Contrary to common belief, it is not highly contagious, and while the exact transmission route is unknown, it is believed to be transmitted via respiratory droplets from the nose and mouth during close, frequent contact with infectious individuals. Many people’s immune systems are able to eliminate leprosy in the early stages of infection, and there appears to be a genetic component to leprosy susceptibility, possibly related to Parkinson’s disease.
Leprosy is very curable. Multi-drug therapy, supplied free of cost by the World Health Organization, runs for six months to a year, and individuals are no longer infectious after as little as two weeks of treatment. However, the physical effects of the disease, and the stigma, can last a lifetime.
In January 2016 I visited the leprosy ward at Jesu Ashram Charitable Healthcare Centre for the Destitute and the Poor in Siligury, West Bengal, India to meet the patients and hear their stories.
Stigma
The stigma attached to leprosy is pervasive and unique. People are considered ‘lepers’ (a discriminatory term) even after they are cured of the leprosy-causing bacteria because of the disfiguring physical effects of the disease, resulting in devastating lifelong social ostracization.
Prakash
Prakash is a 49 year old man who was diagnosed with leprosy in 1996. He is unable to return to his village due to social stigma, and now works full time at the hospital as part of the rehabilitation programme, living alone in a flat nearby. Hospital director Fr. Pramod Dabhi explains:
‘...because of the disease he could not go back to his village. People will not accept him, try to avoid him, try not to associate with him, look down upon him...so it’s very painful for him. They will mistreat him...treat him almost like an animal. Many patients don’t go back home because of inhumane treatment, sometimes by their own family members... sometimes they wish that this person was not there, or that this person dies, or because of this person the whole family is cursed...the curse of god has come on this family, and they don’t treat this person with human dignity and respect. So that is a tragedy for many many patients.
If left untreated, leprosy can affect the skin, nerves, limbs, and eyes. Many patients avoid treatment until it is too late. Leprosy itself does not cause fingers and toes to fall off, a common misconception. Loss of fingers, toes and even entire limbs is due to multiple factors: the infection damages nerves, causing numbness, as well as compromising the immune system, with minor injuries leading to uncontrolled infections with disastrous consequences.
Justin
Justin has been at the hospital for 4 months, his second stay, to deal with ulcers on his legs from unresolved leprosy. He works in the garden, despite severe disfigurement to his hands. He says:
‘I’ve got a new life in Jesu Ashram, because I would have been dead if the hospital had not supported me. I was very very serious. I'm happy to be here.’
Leprosy by association
The social stigmatization of leprosy is not limited to sufferers, but extends to the families of leprosy patients as well. Justin was shunned by his family because the people in his village believe that leprosy is a curse, hereditary and incurable, so his presence in the home opens them to the same ostracization.
Martin
Martin first came to the hospital in 1973, and even though he was cured of leprosy long ago, he has been there ever since. Fr. Pramod:
‘His family also rejected him, and since he was very good with dressings and helping out, we kept him on. We built a house for him outside, and he’s married and has children. His wife was also a leprosy patient, but was in the initial stage, and she was already engaged with somebody to get married, and that person came to know that she has got this disease, so then they discontinued the engagement, said we don’t want to marry. Since Martin was in touch with her at the hospital, they arranged their marriage...a kind of love marriage.’
The poverty link
Risk factors for leprosy include unclean water, poor diet and a compromised immune system. Coupled with a lack of education and compounded by lack of sanitation, the disease affects primarily the poor and the homeless. Children are more susceptible to the disease than adults, and men are more likely to get the disease than women.
Patients stay at the hospital as long as they have open ulcers, which are difficult to treat due to their suppressed immune systems. Once discharged however, many patients are non-compliant with treatment, stopping multi-drug therapy before the required six months to a year, resulting in relapses, and a return to the hospital.
Mental illness and mental disability are also aggravating factors. The patient pictured below frequently ‘escapes’ from the ward and lives rough for days before being returned, his ulcers reinfected.
The women’s ward
While men are more likely to contract the disease than women, studies have shown that women can take twice as long as men to get diagnosed, resulting in a compound discrimination based on gender, stigma and disability.
Reena: The hope of reconstructive surgery
A common leprosy disfigurement is known as claw hands, a result of the disease’s destruction of connective tissues.
Patients are unable to extend their fingers, resulting in significant disability. Reconstructive surgery restores range of motion and function.
One of the younger patients I met on the ward was Reena, who suffers from serious impairment due to claw hands.
The hospital has a surgical suite on loan from a hand surgeon in Kolkata who specializes in reconstructive surgery for leprosy patients, and are preparing to begin surgeries.
Education: An uphill battle
The biggest disease today is not leprosy or tuberculosis, but rather the feeling of being unwanted.
-Mother Teresa
While there are no longer forced leper colonies in India, and an effective multi-drug therapy has existed since the 1970s, education lags far behind, and leprosy patients continue to suffer from social isolation and discrimination long after they are cured.
Thank you: Pramod Dabhi, Edward Arokiaraj, Kalyan Tirkey, Divya Anand, Nahlah Ayed, Giles Clarke & Ruth Kaplan.
Ed Hanley is a musician, photographer and filmmaker based in Toronto, Canada. He is currently working books documenting the aftermath of the 1984 Bhopal Gas disaster and the Dibrugiarh-Kanyakumari Express, the longest train in India. Future projects include a series on mental health in India. He can be found on Twitter, Instagram and Youtube.