Chapter One

1. Introduction
1.1 Background
Leprosy is a chronic infectious disease that is caused by a mycobacterium (Mycobacterium
leprae), affects especially the skin and peripheral nerves, and is characterized by the formation of
nodules or macules that enlarge and spread and are accompanied by loss of sensation with
eventual paralysis, wasting of muscle, and production of deformities about 12 million people
worldwide have leprosy, a disfiguring, chronic infection that damages nerves, skin, eyes, and
mucous membranes.
The good news is that leprosy is relatively easy to diagnose and cure. It is caused by the microbe
Mycobacterium leprae, which produces telltale symptoms of enlarged nerves and light-colored
patches of numb skin on a patient's face or extremities
Globally, 244,796 new case of leprosy were detected during 2009 and the registered prevalence
at the beginning of 2010 was 211,903 countries globally. Sixteen countries globally (7 in Africa
including Ethiopia) accounted for 93% of all new case detected during 2009. The proportion of
cases with leprosy among new cases in the Africa region ranges from 32.7% to 94.27%. The
proportion of children among new cases of leprosy in the African region ranges from 2.1%
31.76%. In the proportion of females among newly detected cases of leprosy was in the range of
6.5% to 59.11 during 2009.
Ethiopia is a land of ancient history and source of human civilization as the historians tells us.
Due to the fact that it is one of the historical countries, it may also be a fact that it is one of the
countries with the origin of the leprosy disease, as it is named by historians however there is no
clear documentation about it. Leprosy was identified as a major health problem in the country
since the 1950, since then the effort to control leprosy began by the establishment of a National
leprosy office in the Ministry of Health with the support of German Leprosy Relief Association
(GLRA).
There are three main regions where Leprosy is still endemic, that is Oromiya, Amhara and
SNNPR in the Central and South Eastern highlands. With the introduction of MDT for leprosy,
the Prevalence of the disease has sharply gone down to 0.5% however the notification of new
leprosy cases remain constant over the past ten years an indication that transmission is still going
on. Following the introduction of MDT and the consequent reduction in the duration of
treatment, there resulted a constant and steady decline in the prevalence of leprosy. Due to the
reduction in number of patients registered, which has also reduced the workload of leprosy
services, they have integrated the leprosy programme within the general health services. The
integration services covers a wider geographical area and is closer to the community. This
integration is believed to reduce the stigma associated with leprosy and they think may have an
impact on the Epidemiology. In 1994, the country thought of introducing the programme on

Combined Tuberculosis and Leprosy. The implementation of the combined Tuberculosis and
Leprosy Control Programme began in 1997.
The Objectives of the TLCP were: To interrupt transmission of the infection to reduce morbidity,
mortality and disability to prevent emergence of drug resistance. The basic strategies to achieve
these objectives were: Early case detection adequate chemotherapy Provision of comprehensive
patient care. In view of this Leprosy, patients are diagnosed and treated in all health facilities
together with other patients. This is a breakthrough in the abolition of stigmatization and
specializes vertical services. This approach has guaranteed a patient adequate treatment as well
as self-respect at all levels of services. Disability prevention is considered as a matter of priority
and services are available in leprosy control services.
The social effects of Leprosy victims may lose their economic independence as the result of
losing their jobs, their physical independence as a result of disability, their self-esteem as a result
of social isolation, stigmatization and generally live a lower quality of life.
Generally when patients are cured without disability the acceptance of leprosy sufferers by the
community improves and patients enjoy all sorts of social participation. This again helps to
divert the stigma that has existed for years and has been observed as a major social problem.
Currently leprosy is not a major public health problem in Ethiopia as the prevalence rate has
gone down to 0.8 in 10000 cases against the WHO recommendation, however the alarming note
is constant new case detection. The strategy to achieve this is through raising awareness to the
community about leprosy so that cases report to the health facilities at a very early stage of the
disease before disabilities ensue.
We are studied on overall activities of Addis Ababa leprosy Victims Rehabilitation Association.
ALVRA established in 1984 E.C by a few leprosy victim persons with in the support of ALERT
hospital. They provide different services to the leprosy victims it includes:
Medical referral system
Registration and facilitate different educational and social support with different NGOs
provide to children of the victims.
They are working with Ministry of Education.
They support old age victims for Income Generating Activities (IGA).
They have 50 victim womens who working by Handicraft.

1.2 Statement of the Problem

Leprosy is one of the worlds oldest diseases, tracing back to the ancient civilizations of China,
Egypt and India. Leprosy was also rampant during the 13th Century in Europe. Historically it is
one of the most stigmatized diseases with a reputation of being highly contagious, disfiguring
and
In curable. In the past leprosy sufferers were banished to (leper colonies). Unfortunately, this
practice still exists in some countries today, even though Leprosy is now curable and is not
considered highly contagious. As we mentioned above, Leprosy is caused by bacteria called
mycobacterium Leprae, it was discovered in 1873. Treatment became available in the late 1940s
with the introduction of Dapsone.
This was revolutionary for Leprosy patients since it allowed them to be treated in outpatients
clinics, making isolation no longer necessary. Today, the drugs used to cure Leprosy have
improved. They are more effective and the length of treatment is shorter.
WHO stated that the victims in the past were banished to (Leprae colonies) because there was no
real understanding for Leprosy and how it can be transmitted; and there was no treatment.
According to Michael Samy director of (SILRA), stated that the Leprosy may be suspected if one
or more slightly whitish hypo-pigmented or reddish patches appear with loss of sensation or
impairment of sensation (numbness) with or without paralysis of fingers or legs. He mentioned
that, thickened nerves which may be painful can also be a sign for leprosy as well as thickened
patches which are flat or rose over face or body.
Mr. Samy mentioned also, that there are two types of Leprosy where the patient shows no
immunity to the germs. Those who have no immunity develop multi-bacillary (many germs) or
lepromatous Leprosy. Those who have some immunity develop paucibacillary (few germs) or
tuberculosis leprosy. Leprosy is perhaps more appropriately classified as chronic stable disease
than as an acute infection responsive to elimination strategies. In many countries activities to
control and treat Leprosy are integrated into the general health-care system. This reduces the
stigma associated with Leprosy. Leprosy causes long-term immunological complications,
disability and deformity. Detecting new cases and monitoring disability caused by Leprosy will
be a challenge. One solution is to implement long-term surveillance in selected countries with
the highest rates of endemic diseases so that accurate estimate of the burden of Leprosy can be
determined.
In Ethiopia, a total of 4430 (3922 MB and 378 PB) new cases and 5528 all forms of Leprosy
cases were registered in 2009/10. The proportion of children among new cases of leprosy was
7% during the same period. About 22% and 9% of new cases of leprosy had disability. The
national registered prevalence in the same year was 5,303. The treatment outcome of cohort of
2008/09 was: 85% and 74%o l completion rate for MB and PB respectively. (MOH. 2012)

At Present many leprosy Victims who live in poor life condition around kore ( Zenebwork) area.
Those leprosy victims to live and to get equal access to economic resources, human right and
treatment as like any one without any stigma and discrimination. And they participate to different
interpersonal communication with others peoples.
In our topic there is a gap in social problems related with leprosy victims. Such as:
Ethiopia has various laws, proclamations and regulations, in this study we will see and asses the
implementation of these laws about disability with leprosy. We will visit government
organization like labor social affairs offices. We will also visit the community when they live
around our target organization.

Most people thought that leprosy victims people cant do work.

In terms of social relationship peoples lack interest spent their time with the
Victims.
Less organization with in working with leprosy victims people and limitation of
Funding.
Lack of organizational support to the vulnerable leprosy victims people.
Lack of awareness about the transmission of Leprosy.

1.3 Questions of the study:

This research is investigating and exploring the main issues posed by these Questions.
a. Do people with the leprosy victims have equal access to social service?
b. What are the problems faced by people with leprosy victims.
c. What are the appropriate measures and programs needed for rehabilitation as a process of
reintegration?
1.4 Objectives of the Study:
1.4.1 General Objective:
Assessing of the social effects of leprosy in the case of Addis Ababa leprosy Victims
Rehabilitation Association.
1.4.2 Specific Objectives:

a) To study sources of the social effect of Leprosy.

b) To assess the perception of people towards Leprosy Victims.
c) To assess the contribution of ALVRA for Leprosy victims.
d) To assess the awareness level of the society around kore (Zenebwork area)
1.5 Research Methodology
Initially we visited Addis Ababa Leprosy victims Association. (ALVRA) and one to one
interaction was made with workers in ALVRA. We have used both qualitative and quantitative
research methods approaches. The fact we incorporated qualitative research approach was that it
can give us in-depth knowledge about the social effect of leprosy with few respondent and in
depth information. The reason we include quantitative research approach we cannot generalize
the data gathered using qualitative research approach. Quantitative research is also advantageous
for wider knowledge.
The research plan was descriptive, in the research the main role was questionnaire and entire
questionnaire was administered after that the individual communication was done with
respondent to go in depth of the details.
1.5.1 Sampling Method
Case selection site
The reason why we preferred ALVRA is:

The majority Leprosy victims are living in kore (Zenebwork area)

The majority of the association employees are Leprosy victims.
The Association is working only on leprosy victims.
The social effects of leprosy are still in that area.

1.5.2 Sampling Technique

After identified ALVRA in which it based Kolefe keranio as our focus area, we used both simple
random and accidental sampling technique so as to select the sample.
The accidental sampling technique was used to include leprosy victims for the person that either
they do not have sufficient time to share what they have or they do not to talk to us so we
interviewed ALVRA employees whom we know them as a friends.
The simple random sampling technique was applied for it gives equal chance of being selected
into the sample. Simple random sampling technique was used to select 30 out of 300 leprosy
victims.
1.5.3 Sampling Informants

With regard to respondent sampling. Leprosy victims that has received service at Addis Ababa
Leprosy Victims Rehabilitation Association because they experience the reception forward to
them. They also experience the social effect of leprosy the number of leprosy victims whom we
randomly selected 30. We also incorporated ALVRA workers deliberately into the sample
because due to their long stay and experience in the organization and they could give us better
and depth information for the purpose of the study. The other group of respondents constituted 3
ALVRA social workers and one chairperson of ALVRA. Besides, we have include 2 local
persons. As far as sampling instruction is concerned it was difficult to get workers at once and
leprosy victim at the same time.
1.5.4 Source of data
Basically, there are two types of data, primary and secondary source. The combination of both
primary and secondary information obtained from different documents, internet and other
materials.
Primary data were collected from questionnaire and interviews. We have used two kind of
questionnaire with both closed ended and open ended question. The questionnaire was prepared
in Amharic language. In-depth interview and key informant was held with local people and
ALVRA workers and chairman respectively.
1.5.5 Scope of the Study
This data was gathered at ALVRA. We intended to study the social effect of leprosy in this area.
The respondents all were using leprosy victim at a time. It includes both female and male service
recipients of ALVRA and age above 18 years old in order to get correct information. Workers we
interviewed were having more than 2 years work experience. We were interested to study
respondents receiving 2005-2008 E.C at ALVRA.
1.5.6 Limitation of the Study
This was lot of factors that made our work difficult. The first is language, when we gathered the
data; the medium of instruction was Amharic language. We changed the data that we had
collected in Amharic language into English language even though we have the problem of
capability to translate it.
The second was it was so hard for us to meet as per schedule to conduct the research everyone in
our group have their own jobs as daily routine. In addition to this we have regular class session
and lack resources.
Some respondent did not replay because of they expect something from us.
Resource limitation Time, Transportation and Money

1.5.7 Data Analysis

Data analysis refers the analysis of information gathered by questionnaires and interviews. The
data gathered based on the purpose of the study was organized properly. The qualitative and
quantitative are analyzed in the way that can answer our objective of this study. The data is
organized through tables.
1.5.8 Hypothesis of the study:
a) The integration of people affected by leprosy in the community is low.
b) People affected by leprosy lack confidence to meet new people in their life.
c) There are no equal opportunities for people affected by leprosy with the other
People for work.