1327074922LEPRANews01 12
1327074922LEPRANews01 12
1327074922LEPRANews01 12
From exclusion
to inclusion
In this issue:
Two generations at a crossroads
Building futures
January 2012
www.leprahealthinaction.org
LEPRAnews
In this
issue
Welcome
Welcome to the first edition of LEPRA
News for 2012. In this issue we focus
on leprosy-related discrimination
found in local communities, colonies
and in law. As we hand over our Brazil
projects to our Dutch partners, we
remember young Adriana, whose
plight was shared with millions on
the childrens programme Blue Peter
16 years ago. Adriana didnt get
treatment in time and her friends
rejected her. Like those residing in
leprosy colonies in India, she was
made an outcast. You may remember
buying an Adriana Rose in support.
Finally, we examine the ways that
leprosy-related stigma can be reduced
which includes campaigning both
overseas and in the UK, for the
rights of those affected; education
programmes and self-help groups. I
hope you enjoy all the articles, and
look forward to your feedback.
Joanna Belfield
Editor, LEPRA News
Editor
Joanna Belfield
Contributors
Sarah Nancollas Chief Executive
Joanna Belfield Editor LEPRA News
Irene Allen Asst Editor Leprosy Review
Catherine Cherry Programmes Officer
Duane Hinders Country Representative (NLR)
Madhavi Sakuru Programmes Officer
Nicolette Dawson Communications
Reg Charity no. 213251
Paul Chinnock Volunteer (UK)
Charity registered in
Lizzie Dearling Events Fundraiser
Scotland no. SC039715
Karen Page Events Fundraiser
Ros Kerry Community Fundraising
Community Fundraising Team
Photography
LEPRAs employees
Peter Caton
Colchester Gazette
Design and Print
The Print Connection, 01473 810230
2 | healthinaction
January 2012
Cover Story
Campaigning News
10
Fundraising News
13
Fundraising News
14
16
Supporters Trips
January 2013
messagefromtheCE
healthinaction | 3
COVERstory
4 | healthinaction
COVERstory
communities by empowering them with skills
to take up employment, start businesses and
become economically productive. It was inspiring
to meet some of these people motivated to
make changes in their communities; to change
attitudes by strong will and create opportunities
to contribute and become valued. They were
learning skills to care for themselves and were
striving for independence.
It was clear, however, that much remains to
be done. LEPRAs self-care clinics such as the
one attended by Tahomina (pictured below),
provide essential care for people disabled by
leprosy, yet this group is only successful because
the government doctor who runs the clinic
recognises the importance of leprosy work and
is supportive of LEPRAs efforts. Sadly this is not
the story elsewhere. However, in November 2011,
a law preventing people affected by leprosy from
leprosy treatment in mainstream hospitals was
repealed. Until that change, people with leprosy
were banned from entering hospitals.
Reconstructive surgery can have a dramatic
impact on someones life, but there are just
Tahomina was ten years old when she began to
lose sensation in her hands and feet. Her father
took her to a doctor who diagnosed leprosy and
prescribed multi-drug therapy.
Unfortunately, she had already sustained
permanent nerve damage. This caused her to
develop painful wounds and ulcers. Over the years,
without access to care, Tahominas disabilities
worsened. She lost all her toes and her hands
became severely deformed. Nerve damage to her
eyelids meant she began to lose the ability to blink.
Today, Tahomina is 35 years old and has a two
year old son called Tawfik. It is hard to imagine
how difficult it is washing, dressing, feeding and
holding him with missing fingers, but somehow
she manages to care for him.
n There
n There
healthinaction | 5
newsANDNOTES
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meetTHETEAM
a job at the centre where she met and married
her new husband, Sukdev. One of the couples
specialities is yoga which they teach to leprosy
and HIV patients at the centre.
Building futures:
LEPRAs role as
employer
In a LEPRA health referral centre in
India, a woman is diagnosed with
leprosy. Three kilometres away, a
woman discovers she has HIV.
Both are terrified because they know that stigma
and its consequences have a severe impact on
lives. Stigma is fuelled by lack of knowledge and
acceptance. People can be unfairly and unjustly
treated because of their disease and association
with a certain group. This article shows how
LEPRA promotes acceptance and access to
employment through offering paid and unpaid
opportunities to people living with HIV and
with leprosy.
These people need our services here and it is
our pleasure to provide them, says 28 year old
Shanti, a nurses aide at LEPRAs community care
centre in Koraput, Odisha. The centre specialises
in the care of people undergoing treatment
for leprosy as well as HIV. With its trees and
well-kept grounds, it is an oasis of care, calm and
recuperation compared to the hustle and bustle
of the town.
healthinaction | 7
insideTHECOLONY
insideTHECOLONY
Not only do the residents of Shantinagar face
poor employment prospects, they are shunned
even in death. In their community, and in others,
people with leprosy are not entitled to be buried
with dignity. Their burials are performed on a
patch of wasteland outside Shantinagar because
the authorities of public cemeteries will not allow
their burial. They incorrectly believe leprosy to be
contagious even after death.
healthinaction | 9
campaigningNEWS
Leprosy discrimination
is a human rights issue
Standing in solidarity: Mr Mallikarjun, Mr Mallareddy and Mr Narsappa with residents of the colony
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campaigningNEWS
n Helping
n Working
n Mobilising
n Working
n A
n An
Campaigning in the UK
LEPRA recently ran a series of events at the
University of Essex, which has a strong and
highly regarded Human Rights faculty. The
event, which encouraged students to pledge
their support to implement the UN resolution
to eliminate leprosy discrimination, mirrored
some of the activities taking place in India. The
purpose was to enlist the support of local MPs
and students in putting pressure on the UK
government to actively implement the resolution.
healthinaction | 11
programmeNEWS
Protecting Indias
tribal people from
disease: news
from LEPRAs
Sahyog project
Background
Tuberculosis and HIV/AIDS are both major threats
to health worldwide. India bears one third of the
global TB burden, with some two million new
cases and around 330,000 deaths every year.
The prevalence rate for HIV is lower than in many
other countries, yet there are over two million
Indians who are living with HIV.
In every country there are people who are more
likely than the rest of the population to become
infected. In most cases these are the poorest
members of society who are also less likely
to receive health care. Not only does poverty
increase the risk of infection, but such diseases
also make people poor and hold back the
development of communities and nations. In
India, some of the most vulnerable people are
those who are members of what are known as
the scheduled tribes around 84 million people
(eight per cent of the countrys total population).
Most of them live in geographically isolated areas
and have a limited level of contact with the rest
of Indian society. As a result, their communities
are less well developed and are poorly served by
the education and health systems.
What is LEPRA doing to help?
In 2008, with funding from the European Union,
LEPRA launched a project in Odisha State, to
support the Indian governments Tribal Action
Plan, which aims to ensure that the national TB
control programme reaches tribal communities.
The project focuses on three districts Koraput,
Rayagada and Malkangiri which are home to
some 1.3 million tribal people. Locally LEPRAs
work is known as the Sahyog (Cooperation)
project.
12 | healthinaction
LEPRA holds
fundraisingNEWS
2012
healthinaction | 13
fundraisingNEWS
Tributes paid to legendary
teacher and LEPRA
supporter from Bristol
Pupils and staff have paid tribute to a legendary
teacher from Yate. Ray Mardle, who was a
deputy head teacher at Colstons School in
Bristol, died suddenly in October aged 53.
LEPRAs Fundraiser for Bath and Bristol, Sara
Cumming, worked closely with Ray over the
past few years, and represented LEPRA at a
Commemorative Service held at Bristol Cathedral
in November. Pupils, parents, staff and Old
Colstonians paid their respects to a highly
respected and dedicated man.
Ray began a long relationship with LEPRA back in
1997; organising and running annual fundraising
events for year 7 and 8 pupils. He was a great
supporter of LEPRAs work and established an
annual spring fundraising event, which became
part of Colstons timetable.
St Helens pupils
have a fun workout
in aid of LEPRA
14 | healthinaction
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