The hidden suffering of India's lepers
Pastor Dale Morgan
The hidden suffering of India's lepers*
By Fergus Walsh
BBC News, Hyderabad
While India may have officially been declared a leprosy-free zone, the
disease continues to leave more than 100,000 sufferers often stigmatised
and isolated.
I met Mamatha at a health clinic in Hyderabad. She was wearing a bright
yellow party dress. She is 10-years-old and has leprosy. The doctor
asked her to close her eyes and then tickled her face with a nylon bristle.
Mamatha knew this game. Each time she pointed with her finger to the
place being tickled. But when a large patch of skin on her left cheek
was touched, Mamatha didn't move.
The skin patch is not eczema, which my own 10-year-old daughter suffers
from, but leprosy. The disease causes nerve damage and creates what's
called "anaesthetic skin".
Now, if you cannot detect heat, cold, or pain you run the risk of
serious limb damage. Repeated injury can mean people with leprosy lose
fingers and toes.
The clinic is run by the charity LEPRA. The doctor told me that
fortunately Mamatha's leprosy had been caught early. A six-month course
of antibiotics will cure her.
For the first few weeks I kept crying - and asking why me?
Laxmi, Leprosy sufferer
Her father confided that no-one else in the family knew about Mamatha's
illness. He had not even told his wife.
Leprosy is an ancient, much feared disease. But although it is
infectious and spread like tuberculosis, it is very hard to catch. Most
of us have a natural immunity to the germ responsible.
As soon as patients begin treatment, they cannot pass on the disease.
But even though it has been curable for decades leprosy still carries
huge stigma and the risk of discrimination. Mamatha's father simply
wanted to protect his child from being labelled a leper.
Bold statement
In the past 20 years, 15 million people worldwide have been cured of
leprosy - the majority in India.
Recently India announced it had "eliminated" leprosy. That is a pretty
bold statement. If something is eliminated you might expect it not to be
there any more.
But, according to a target set by the World Health Organization,
elimination simply means there is now fewer than one case in every
10,000 people. Given India's vast population, this means there are more
than a 150,000 new cases each year - 150,000 people each with their own
story of leprosy.
Another patient at the clinic, Mahammadi, invited me to her home. She
had been cured of leprosy, but the disease damaged her immune system.
She has infected lesions on her arms. Mahammadi showed me the drug she
was taking - called thalidomide - the most infamous medicine of the 20th
century. It caused birth defects when taken by pregnant women, but is
now a specialist treatment for leprosy.
Mahammadi said the name "thalidomide" meant nothing to her, but yes, the
clinic had told her it was vital she did not get pregnant during the
treatment. Mahammadi's parents said they were praying that the marks
left by leprosy would clear from their daughter's arms; otherwise it
might be hard for her to find a husband.
The risk of social rejection is so great that many people cured of
leprosy end up living in isolated settlements.
Today there are still more than 1,000 leprosy colonies in India. At the
Shantinugar colony outside Hyderabad I came across Laxmi.
She was sitting in the shade bathing her feet. The scent of jasmine hung
in the air from the flowers tied in her hair. She told me how, when she
was 18, she was diagnosed with leprosy.
Her family were frightened they would get the disease and kept her in a
room at the edge of the village.
"For the first few weeks I kept crying and asking, why me?" she said.
After six months in isolation she was taken away to a clinic and has not
seen her family since. The disease robbed the sensation from her right
foot - and it became so damaged that eventually it was amputated.
While she was being treated she met her husband - also marked for life
by leprosy. More than 130 families live at the colony. They survive on a
meagre government pension which many supplement with weaving. But the
main occupation is begging.
Many of the disabled who stand outside the temples and at road junctions
in Hyderabad carry the marks of leprosy. One man, who'd lost several
fingers, told me that he rarely leaves the colony because people are so
hostile.
"It's impossible to buy a drink at a cafe," he told me. "People cover
their faces, and tell us to leave."
Leprosy may have been officially eliminated as a public health problem
in India, but eradication is a different matter.
India has stopped actively searching for leprosy cases - instead relying
on communities to recognise the disease. The danger is that patients
will either not realise they have the condition or be too scared to come
forward.
The Indian government says it is determined to wipe out leprosy, but the
signs are that this ancient disease will continue to disfigure and
disable well into the 21st Century.