LEPRAnews

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

LEPRA Health in Action

28 Middleborough
Colchester, CO1 1TG
01206 216700
www.leprahealthinaction.org

Message from the CE

Cover Story

Witnessing the positive impact of our leprosy

activities in Bangladesh

News and notes

Work in Brazil continues after handover

Inside the colony

Two generations at a crossroads in Shantinagar

Campaigning News

10

Fighting leprosy discrimination in the UK and India

Fundraising News

13

Fundraising News

14

How youve helped

16

Dates for your Diary 2012-13

Paris Marathon 2012
15th April

Great Swims (1 mile)

Various dates and locations

London Marathon 2012

22nd April

One day Trekathons

Various dates and locations

Edinburgh Marathon 2012

27th May

India Bike Ride

January 2013

BUPA London 10K 2012

27th May

Supporters Trips
January 2013

Great North Run 2012

16th September

For more information about these

fundraising events, please email
events@leprahealthinaction.org or
telephone 01206 216799. More details
are also available on our website.

Virgin Active London Triathlon

22nd and 23rd September

messagefromtheCE

Untreated leprosy caused the eventual collapse of Vithabais nose

Survey reveals high prevalence of

leprosy across India
by Sarah Nancollas

How can you know what services to

provide for leprosy-affected people if
you do not know how many people
are involved?
A judge faced this dilemma when we helped one
of our partner organisations in India, Society for
Leprosy Affected Persons or SLAP for short, raise a
Right to Information request with the Government
of India regarding health care provision for people
with leprosy. As a result of this, a much needed
national leprosy sample survey was conducted in
India in 2011 to find out the true scale of the issue.
Our teams in the field have long suspected that
leprosy is more prevalent than has been reported
and this proved to be the case. Across the whole
country, nearly 50 per cent more cases were found
than had been expected, and in many states it
was three times higher than reported. For LEPRA
Health in Action, it showed that we are working in
some of the worst affected states and that there is
still a major need for our work.
Although the survey painted a bleak picture, there
was a ray of hope for the future. In the State of
Odisha (formerly Orissa), with a population nearly

1.5 times that of the UK, LEPRA coordinates the

international leprosy organisations and acts as
advisor to the government. We have a network of
leprosy referral centres and work closely with health
care providers to train and educate people about
leprosy diagnosis and treatment. We also provide
good quality health education at community level
and work hard to reduce the stigma attached to
leprosy so that people feel able to come forward for
treatment. Odisha was one of the very few states
in the survey where the actual level of cases found
was below that expected. In addition, the level of
disability caused by leprosy was significantly lower
than the national average, showing that people are
being diagnosed early and cured.
In a recent national meeting in India, the leprosy
approach in Odisha was declared a model of best
practice and the government called for it to be
rolled out across India. It is your support that has
allowed us to carry out this vital work as major
donors are not prepared to make funds available for
leprosy. The results of the Indian survey have shown
us that the task is even bigger than we thought,
and we ask for your continued support to help us
transform the lives of people affected by leprosy.

healthinaction | 3

COVERstory

A training session for the self-help group

From exclusion to inclusion

in Bangladesh
by Catherine Cherry

As a Programmes Officer, new

to LEPRA Health in Action, I
recently visited our programmes
in Bangladesh and witnessed the
positive impact of our leprosy work
first-hand.
What struck me straight away was that ten per
cent of people there who are newly diagnosed
with leprosy already have some form of
permanent visible disability: irreversible nerve
damage in their hands and feet, disabling injuries
due to loss of sensation, clawed fingers and toes
and/or eye damage. Even with treatment, the
damage caused is usually irreversible. For many,
curing leprosy is just a beginning. If the disease
is left untreated, people can end up with serious
deformities that continue getting worse.
To address this, LEPRA Bangladesh works
tirelessly to tackle the barriers preventing people
being diagnosed early. I visited a film show in a
small village in Sirajgonj one of many that take
place across north-east Bangladesh. I watched as

4 | healthinaction

the whole village enjoyed an evening combining

popular cinema with information on leprosy; a
method of reaching people of all ages with health
information. This is one of many strategies we
use. As well as theatre, community meetings
and school visits to raise awareness of leprosy,
we teach people to recognise the early signs and
symptoms and where to access treatment.
Fear of rejection and discrimination by their
communities is another barrier to people coming
forward for diagnosis. I visited self-help groups
in Bogra district which were started as part of
LEPRAs Exclusion to Inclusion project. This is an
area where numbers of leprosy cases are well
above the national average.
Group members told me that they are not only
met with discrimination from their communities,
but also experience self-stigma due to losing
confidence in themselves and believing that
they are a burden to their family and community.
This negatively affects their opportunities to
earn a living. Our project combats this stigma
and makes people with leprosy feel part of their

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.

two reconstructive surgeons in the whole of

Bangladesh (one of whom works for LEPRA),
severely limiting the number of people who can
benefit from surgery.
With your support, we aim to expand our
programme in Bangladesh, to help more people
affected by leprosy and to find and treat people
with the disease at the earliest stages, before
they become irreversibly disabled. We would
like to train more surgeons so that more people
affected by leprosy can benefit from restored
function of leprosy disfigured hands and feet.
Your invaluable support will help us to achieve
these goals.
n The

number of new cases with established

disabilities at the time of detection has
reached ten per cent in Bangladesh

n There

are tens of thousands of people in

Bangladesh living with permanent leprosy
disabilities

n There

are just two surgeons in Bangladesh

with the necessary skills to perform
reconstructive surgery for leprosy disability

further damage. She now has customised shoes to

protect her feet from further disfigurement. LEPRA
also referred her for surgery on her eyelids without
which she would have lost her vision. Being part
of this group has helped Tahomina not only to
prevent and manage her disabilities, but has also
given her the opportunity to meet others affected
by leprosy, and a support network to build her
confidence. There she met her husband Asiruddin,
who also had leprosy. They are now happily
married and are proud of their young son.
Tahomina now knows how
to protect her hands from
further injury

For the past three years, she has regularly

attended a leprosy self-care group run by LEPRA
at a local clinic where staff have taught her how to
protect her hands from burns when cooking and
how to treat her wounds to prevent infection and

healthinaction | 5

newsANDNOTES

LEPRAs work in Brazil

continues after handover

Some of the people we have helped

After nearly two decades of working in Brazil,

LEPRA leaves behind a strong legacy of social
and rehabilitative projects that complemented
leprosy services. We were one of the first ILEP
(International Federation of Anti-Leprosy Organisations) members
to fund projects driven by patient need, instead of a state-level
approach. As the incidence of leprosy declines in Brazil and
elsewhere, this decision to work in the most endemic areas
was a key component of breaking the chain of transmission,
something that has since been adopted by other members.
In addition to targeted leprosy control initiatives, LEPRAs
projects in Brazil focused on strengthening the work of nongovernmental organisations (NGOs) and community groups,
the development of self-care and support groups, and the
integration of leprosy patients into general rehabilitation services.
These projects went beyond the normal scope of government
programmes and provided a vision for the way NGOs can truly
work as a complementary partner in leprosy control.
Between 2009 and 2011, LEPRA formed a productive and
beneficial alliance with its ILEP partner, Netherlands Leprosy
Relief (NLR). LEPRA ran NLRs projects for two years while it
was attempting to open an office in Brazil. Now that LEPRA
is refocusing activity, NLR will continue many of the previous
initiatives in Cear, Paraba and Rio Grande do Norte states that
LEPRA developed over the last several years. There is even
continuity of human resources as many of the staff members
that worked on LEPRAs projects over the years will continue on
with NLR.
LEPRA will be missed in Brazil. It paved the way for smaller,
focused interventions in areas that the public sector does
not always prioritise but that have a great impact on the lives
of people affected by leprosy. However, we depart with the
knowledge that our efforts will be sustained through our
partnership with NLR and the Brazilian Ministry of Health.

6 | healthinaction

Giving through our

card selection
We would like to thank you
for supporting and promoting
our vital work through
buying from our Christmas
range in 2011. Our Easter
cards are now available to
view and order online at
www.leprahealthinaction.
org. Alternatively, please
contact Karen Page on
01206 216731, email
karenp@leprahealthinaction.org

Amazon Kindle for

Christmas? Try
this novel way of
fundraising
LEPRA supporter Janet
Roberts has released her novel
Every Four Minutes with all
proceeds to be donated to
LEPRA. The book focuses on
a character who is diagnosed
with leprosy. Janets motivation
in supporting our cause came
from reading Perry Burgess
Who Walk Alone. Her e-book is
available to purchase online at
www.amazon.com/dp/
B005VQUQ7U

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.

Taking time out after yoga - employee couple Shanti

and Sukdev outside Koraputs counselling room

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.

Everywhere there is stigma and

discrimination, except here. I am
proud to be part of the LEPRA team
fighting this. - Shanti, nurses aide
Srikant Sharma is 29 and has HIV. He has been
a LEPRA Outreach Worker in Indore district,
Madhya Pradesh since 2009. Srikant recalls his
painful past of being rejected by his community
and losing his job at a garment shop earning 20
a month. He attended his LEPRA interview on a
borrowed bicycle and in borrowed clothes. His
eyes welled up and he choked as he shared his
happiness upon getting the LEPRA job: LEPRA
has transformed my life. I feel a deep gratitude to
LEPRA. He now earns an acceptable wage and
proudly showed us his motorbike which he was
able to buy from his income. He says, I now own
my shirts and trousers, and the youth from my
village borrow them for special occasions.
Srikant counsels TB and HIV patients and raises
awareness on these diseases across 30 villages.
He is known to be one of the most diligent
employees. Srikant added, I was able to save
the lives of 14 TB patients. When I help others, it
makes me forget my pain. He aspires to become
a laboratory technician and LEPRA is helping him
to access training.
LEPRA India employs many people like Srikant
who find it difficult to earn a living, including
those affected by leprosy. Previous beneficiaries
like Srikant and Shanti are the best advocates of
our work in the community and are a role model
to others living with a disease.
Srikant gets strength from
helping others in his role as
LEPRA Outreach Worker

Shanti has HIV and came to the centre as a

patient and a bereaved widow. She was cast out
and made homeless as a result of contracting
HIV from her young husband. Weighing seven
stone, she was malnourished and in poor health.
With LEPRAs help, Shantis condition improved.
Recognising her potential, LEPRA offered her

healthinaction | 7

insideTHECOLONY

Some of Shantinagars older residents include Lingamma

and Krishna featured in Septembers LEPRA News

Of dreams and aspirations

two generations at a
crossroads in Shantinagar
The Shantinagar leprosy colony
is located on the fringes of
Hyderabad in Andhra Pradesh.
It is one of the 630 colonies in
India and is named after the
famous leprosy hospice set up
by Mother Teresa in the 1950s in
Kolkata, east India. Shantinagar
is Hindi for the City of Peace.
Ironically, peace eludes many
residents of Shantinagar who live
there not by choice but by force,
persecuted as outcasts.
8 | healthinaction

Disfigurement has left leprosy-affected people

socially displaced and economically disadvantaged.
For residents at Shantinagar, advanced deformities
make it impossible to hold the tools of trade and
people are refused jobs because of their condition.
A typical day instead involves leaving the colony
very early in the morning to beg at traffic lights,
temples and mosques as they find it difficult to
find a livelihood of dignity. People throw money
and food at them. For all the pain endured after a
day of begging, they take back less than 1 a day
on which a family of three or four have to survive.
Some of these residents spend the night on the
footpaths instead of their homes so they dont
miss the early commuters next day. They have lost
their self-esteem and self-respect to leprosy.

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.

hope and resigned to fate, and another that is full

of dreams and aspirations.
The older generation however, wishes a stigmafree future for their children far away from
the leprosy colony; a future where the legacy
of leprosy - a lifetime of rejection, of being
unwanted, unloved and uncared for by the
society, does not plague them.

The young people in Shantinagar are the second

and third generation affected by leprosy. They are
not infected by it. They were sent to local schools
and later colleges with the help of local NGOs
and individual supporters like you. Whilst the
girls often marry early and leave the colony, the
boys, now in their early twenties have managed
to find employment in the city and are very proud
that they dont beg for a living. This second
generation strongly disapproves of their parents
begging on the streets; a discernible clash
between the two generations one that has lost

How LEPRA helps

In Shantinagar, LEPRAs main contact is Mr
Narsappa, the President of the Society of Leprosy
Affected Persons (SLAP) an organisation voicing
the rights of people with leprosy. As the World
Health Organisation points out, the time has
come to shift the emphasis from the medical to
the social aspects of the disease.
Earlier this year, LEPRA facilitated Mr Narsappas
attendance at the WHOs Global Programme
Managers meeting on Leprosy Control Strategy
where various stakeholders deliberated on the
Enhanced Global Strategy for Further Reducing
the Disease Burden due to Leprosy 2011
2015. In the last few years, Mr Narsappa has
campaigned successfully to get 5,000 leprosyaffected people a free bus pass and disability
pension. It may not seem much, but when you
have to walk three hours to get to the nearest
town, something as simple as a free bus pass
can revolutionise your life.
It also means 5,000 elderly and disabled people
affected by the disease no longer need to beg for
a living. To help improve the health and esteem of

The children of Shantinagar with Madhavi

Sakuru, LEPRAs Programmes Officer

the older residents, LEPRA started a Prevention

of Disability clinic in the colony where ulcers
are treated and wounds are dressed. They are
also taught self-care practices and have been
given specially designed footwear to prevent any
further injuries to their wounds.
It has been a challenging task to engage the
young people of Shantinagar. Although LEPRA
seeks to help younger children access education
and train the older ones in vocational skills,
questions of sustainability have surfaced as the
grown-up youngsters are preparing to leave
the colony. LEPRA is making every effort to
remove the barriers to aspirations of the children
of leprosy-affected people whilst meeting the
needs of the old. It is understandable that
new generations will refuse to live within such
colonies, and in time these colonies will no
longer have a purpose. For now, we are doing all
that we can for the older generation who dont
want to leave the colony at this time in their lives.
Narsappa and the people of Shantinagar have
conveyed their love and greetings to all of you for
the New Year.

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

In India, home to more than half

of new leprosy cases detected
each year, there are 16 laws which
actively discriminate against
leprosy-affected people.
The discriminatory clauses are based on the
Leprosy Act of 1898, enacted during British
rule to protect society from infection when
leprosy had no cure. This Act was repealed in
1985, as research showed that the disease was
only mildly infectious and completely curable.
Yet other archaic laws continue today. LEPRA
actively fights for the rights of leprosy-affected
people by holding public rallies and meetings,
writing petitions, raising awareness through the
press and media, and seeking legal advice for
people who have lost their homes.
Without the support of LEPRA and other NGOs,
leprosy-affected people in India will continue to
be prevented from participating in activities such
as travelling by train and contesting or holding a
post in a civic body. In some Acts, such as the
Hindu Marriage Act (1955), leprosy is referred
to as a virulent and incurable disease and is
grounds for divorce. The housing of people
affected by leprosy in the outskirts of villages,
towns and cities in places labelled as leprosy
colonies perpetuates isolation from the rest of
society as described on pages 8-9, and prevents

10 | healthinaction

social re-integration for thousands of families.

Additionally, such legislation contradicts many of
the articles in the Universal Declaration of Human
Rights.
Such laws and government guidelines even exist
in the UK today, whereby UK Border Agency
immigration guidelines prevent the entry of an
applicant with leprosy, despite the fact that it has
been eradicated here and is curable, with 95 per
cent of us being naturally immune to the disease.
In March 2011, resolution A/HRC/15/30 was
adopted by the UN General Assembly calling for
the elimination of discrimination against people
affected by leprosy and their family members.
The resolution was signed by the UK government
and 58 others, but not India, the worlds most
leprosy-endemic country, because of the 16
discriminatory laws.
Laws can be repealed by successful lobbying of
government and through campaigning. In India an
amendment bill to Juvenile Justice was passed
in India in August 2011. It puts an end to the
practice of separating children with leprosy from
other infants in special homes and childrens
homes: previously they were forcibly moved to
treatment centres. The 1988 Motor Vehicle Act
has also recently been revoked enabling those
living with leprosy to obtain driving licences.

campaigningNEWS

You are helping us to fight

leprosy discrimination
LEPRAs campaigning work in India can only
take place with support from the British public.
Together our approaches to safeguard peoples
rights include:
n Working

with people affected by leprosy and

their state and national-level forums

n Helping

people affected by leprosy to

understand their rights and legal entitlements

n Working

with state governments to bridge

gaps in health services to ensure good quality
leprosy services are made available through
technical support units and referral centres

n Mobilising

and facilitating rallies and other

advocacy campaigns to fight for their right to
equal and fair treatment

n Working

in collaboration with SLAP and

with individuals to provide support for the
protection of rights, designing communications
and ensuring quality of services and basic
amenities for the 20,000 people living in 84
colonies in the state of Andhra Pradesh

The events included: a photo exhibition of

the work of photographer Colin Summers
who visited LEPRAs projects in India; a rally
involving students on campus to demand an
end to leprosy discrimination, and a lecture by
LEPRA India Chief Executive Dr Ranganadha
Rao on leprosy and the effect of stigma and
discrimination upon the lives of people today. Dr
Rao explained during his lecture: Stigma is a
feeling, discrimination is what happens when that
feeling is acted upon. This is a very dangerous
thing.
Bernard Jenkin, MP for North Essex, signed
LEPRAs petition and said: We can beat this
disease if we can end discrimination. Colchester
MP Bob Russell, also pledged his support and
expressed pride in having LEPRA as part of his
constituency, as did Colchesters Mayor.
LEPRA is asking for:
n A

review of all current UK discriminatory

legislation

n A

stronger emphasis on leprosy in international

relations with countries where leprosy is still
endemic

n An

open endorsement of the Principles and

Guidelines which accompany the resolution

Thank you for your support. You can get

more involved by helping us persuade the
UK government to stress this issue in its
diplomatic relations with countries such as India.
Sample letters can be found on our website
www.leprahealthinaction.org/humanity-in-action

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.

Marte and Lily sign our petition to end leprosy discrimination.

Picture courtesy of Evening Gazette, Colchester, copyright retained.

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

Pragati (centre) with Rupashree, LEPRAs Outreach Worker

What has been achieved by this project so far?

One of the most important achievements is the
continuing success of the sputum collection
centres established in 2008. These 180 centres
have diagnosed over 2,000 new TB cases and
conducted tests on 1,200 follow-up cases. Over
180 village health committees have been formed;
with two out of three committee members being
women.
Sahyog held many events during 2010 to improve
community awareness of TB and HIV/AIDS,
including over 200 puppet shows and theatre
presentations. There have been more than 200
film showings and hundreds of paintings and wall
hangings are now on display in key locations.
Project staff attend village health committee
meetings and have trained the members of
these committees to establish and strengthen
a community-based referral system. Health
committee members now refer people with
suspected TB for testing at sputum collection
centres.
The project has also conducted many training
courses intended to enhance the skills of doctors,
laboratory technicians, counsellors and traditional
healers in dealing with patients with health
conditions. Since the project began, nearly 1,000
families have benefited from the distribution
of grain through grain banks which offer food
security during difficult agricultural seasons.

LEPRA holds

fundraisingNEWS

events across the

UK and in India

smaller runs and other activities taking place

across the UK. It doesnt matter if you havent
done anything like this beforehand or if you arent
very fit, as long as youre eager and happy to train
in advance.
There really is something to suit all fitness levels.
Why not test your limits, whilst doing something
to help others? The sense of achievement is
unforgettable. If you contact the team, Lizzie or
Karen can send you a fundraising pack and help
you on your way with fundraising ideas and tips.

Get set for

2012

This years London Olympics is

inspiring people across the country
to get active and boost their levels
of fitness. It has the potential to
encourage people with different
abilities and disabilities to get
involved in sport and achieve a
life-long dream or ambition.
At LEPRA, we have many events to offer that
could give you great satisfaction and improve
your health, whilst at the same time transform
the lives of others who need our help.
This year, LEPRA has guaranteed places in the
Paris Marathon, London Marathon, Great North
Run and London Triathlon. There are also many

Recently, Isobel Thompson donned her running

shoes and ran a five mile multi-terrain event
to support LEPRA. Isobel said: Im not a
natural athlete, so this run was a big challenge,
especially as I only took up running a few months
before. Isobel completed the run proudly
wearing her LEPRA t-shirt, and was encouraged
not to give up by thinking of the hardships
endured every day by people living with leprosy.
We are also looking to recruit people for
Trekathons. These are held on various days
throughout the UK. Whether you fancy dramatic
scenery, quintessential English countryside, or
the streets of our capital, theres a Trekathon
for you! Registration fees are just 49 and the
sponsorship target is 100. These events make
great trip reunions or team-building activities.
For many years, LEPRA has organised sponsored
Bike Rides to India, combining project visits with
cycling and experiencing real India. These trips
are unique and we welcome anyone over the
age of 18 who is relatively fit and looking for a
challenge. Sandra Horne, a keen supporter of our
work, has just returned from another trip to India.
A good time was had by all, and our thanks go
out to all the riders who took part.
We would like to hear from anyone that is
interested in helping us make a difference
in 2012 and sign up for a challenge. Please
call 01206 216799 or email
events@leprahealthinaction.org

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

Fun and fitness at a

workout with LEPRA
On 6th October, girls and staff at St Helens
School in Northwood took part in a series of
aerobic workouts for LEPRA. Girls from nursery
to year 13 participated in 20 minute sessions
throughout the day. The smiling faces of
St Helens participants said so much about the
schools response on being asked to support our
work. They threw themselves into the activity
with great enthusiasm, raising a magnificent
3,200. There is real joy that lives will be
changed thanks to their outstanding effort.

Over the years, Rays commitment to LEPRA has

raised over 14,000, and because LEPRA is such
an integral part of Colstons charity work, we
will be organising a special workout event in his
memory. This will take place at the school during
February.
Money raised will go to The Ray Mardle Fund, to
support children affected by leprosy throughout
their education in Hyderabad, India. The fund
is dedicated to LEPRAs UMEED Project and
its wider aim to reduce the burden of leprosy,
particularly within the leprosy colonies in the
Indian state of Andhra Pradesh.
Ray has already touched the lives of so many
through his work at Colstons and a tribute to Ray
by Peter Fraser, the schools Head Teacher, said it
all: Our pupils would simply
say Mardle - Legend. How
very true.
The Ray Mardle Fund will
ensure that lives continue
to be improved in
his name.
Ray Mardle 1958-2011

14 | healthinaction

Pupils of Folkestone School

for Girls take part in a
sponsored workout

The zumba phenomenon

spreads its way to
Folkestone School for Girls
Pupils in year 7 took part in a sponsored
workout to raise money for LEPRA. The session,
held in October, proved to be great fun and was
enjoyed by all participants. The pupils raised an
impressive 1,653. Miss Neads, Deputy Head
Teacher, said: The girls have raised a fantastic
sum. We are delighted!
Well done to everyone who took part and
thank you to all the families and friends who
sponsored the girls so generously. LEPRA
thanks Miss Neads and Mrs Mundy for their
continued support.

donationFORM
You can donate...
...by telephone

...by internet

01206 216700

www.leprahealthinaction.org

...by post
to the address at the
bottom of the page

Standing Order Form

If you feel that you could help LEPRA Health in Action on a regular basis, we would be very grateful. Regular
gifts help us plan ahead with confidence because we know we can count on your generosity in the future.

Bankers Order

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Please pay the amount indicated on the left to
LEPRA Health in Action, Barclays Bank plc, High Street,

ADDRESS

Colchester CO1 1DD Sort Code 20-22-67 Account No 80151467

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to the paying bank

DATE

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returned to LEPRA and not to your bank.

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LN1/12

LEPRA also welcomes regular donations via direct debit. If you would prefer to make
a regular donation via this method, just call 01206 216700 today and we can do the rest!

Please return this form to: FREEPOST RLUB-KCXE-ZRRY, LEPRA Health in Action, 28 Middleborough, Colchester CO1 1TG
You will save us money if you attach a stamp to your return envelope.

Please treat all donations that I have made for the four years prior
to this year and all donations that I make from the date of this
declaration until I notify you otherwise, as Gift Aid donations.*

Signed

Date

* You must pay an amount of

income tax or capital gains tax
equal to the tax we reclaim on your
donations. You have the right to
cancel this agreement at any time
by contacting LEPRA in writing.

we need your help

Many people are surprised to

hear that every two minutes,
somewhere, someone, is diagnosed
with leprosy. Yet there are no major
funding sources for preventing the
transmission of leprosy and the
disability it causes.
When we first met 16 year old Seema in India,
she was finding it difficult to move her fingers or
grasp small objects. Seema became unable to
write and was afraid of what was happening to
her body. She didnt know what to do. Worryingly,
the problem was getting worse.
Without diagnosis and treatment, Seemas
condition could have left her fingers bent,
immovable and useless, preventing her from
using her hands. She may not have been able
to continue at school. The nerve damage that
she was starting to experience, could have led
to burns developing into ulcers. In a country
where financial security for most women is

tied to marriage, many laws still make leprosy

valid grounds for divorce. Young women with
leprosy can find themselves rejected by society,
considered unworthy of marriage or having a
family of their own.
Yet for Seema, diagnosis wasnt too late. LEPRA
referred her for treatment and because her
condition was detected and cured early, Seema
can move her fingers as before. Her symptoms
were reversible, and she can write at school
and help at home; she doesnt have to hide her
hands, feel embarrassed or fear cruel remarks.
On the day that LEPRAs Communications Officer,
Nicolette Dawson took this photo, Seema had
taken the day off school specially. She wanted
to say thank you and show how well she could
move her fingers. Without the compassion and
generosity of our supporters, that would not
have been possible. LEPRA relies on donations
from the UK public to fund our work with leprosy,
re-shaping the future for thousands of people like
Seema in India and Bangladesh.

Please return the form on the reverse to:

FREEPOST RLUB-KCXE-ZRRY, LEPRA Health in Action, 28 Middleborough, Colchester CO1 1TG
You will save us money if you attach a stamp to your return envelope.

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