- LEPROSY - BUT INDIA WOULD NOT ACCEPT IT STILL HAS IT.
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.
Leprosy damages nerve endings and can result in loss of
sensation
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.
Mohammadi's immune system was damaged before she was
cured
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.
Leper colonies
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.
>From Our Own Correspondent was broadcast on Saturday, 31
March, 2007 at 1130 BST on BBC Radio 4. Please check the programme
schedules for World Service transmission times.
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