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lecture 5

Course Code

of 4
L05 Leprosy - Hansen's Disease
- infectious disease that attacks the nervous system
- Microbacterium Leprae
- low infectious rate, 90% are immune
- enters body
-- immune cells seals off infection (destroys sweat glands, hair follicles, skin's sensitivity)
-- immune cells unable to destroy (bacteria multiplies freely within the skin)
- attacks the cooler areas of the body (colour of skin changes, patchy red marks, progresses
and degenerates, loses sensitivity of nerves/articulation)
- destroys neurons in parts of the body - becomes numb and loses feeling
- causes cartilage in areas to get absorbed back into the body, causing fingers, toes, ears,
noses to disappear
- lepromatous: damages respiration, eyes, and skin
- tuberculoid: affects nerves in fingers, toes, and surrounding skin
- borderline: effects of both types
- long incubation period (2 weeks to 30 years)
signs of leprosy
- pale or slightly reddish patch
- definite loss of sensation in the patch
- signs of damage to nerves (loss of sensation, weakness of muscles, visible deformity, large
bumps on the skin that do not feel pain/do not heal)
- irreversible effects
how leprosy affects lives
- eventually, people lose their fingers and toes and become disfigured
- physically/emotionally disabled - rejected from society and forced to live on their own
* condemnation of society, minimal contact from family
- later stages - lose sight & most of the feeling in their body
- invented since 30s but bacterial became resistant
- multidrug therapy (MDT) in 80s
- 15 million lepers effectively cured in most affected areas
* deny treatment as they don't want to be known to have leprosy
* to prevent association between illness & stigma, people travel far distances for treatment
- discovered by Gerhard Hansen in 1873
- ancient disease - seen to be evil, criminal offense (1940s)
- shipped off to islands/sent to homes for 'quarantine' for the rest of their life
- diagnosis of leprosy was not very effective - diagnosed wrong
- high in Central Africa, Madagascar, India, Indo-Malaya, Brazil
- 17 countries = 94% of new leprosy cases worldwide - 620 638 (2002), 254 525 (2007)
- prevalence is declining between 2006-2007, increased in 10 countries
- India = 54% of total leprosy burden in 2007
* declined within the last 10 years, less infected/diseased due to MDT
- direct link between social stigma and epidemiology - few WHO approved treatment
centres - underreported cases
urban leprosy
- leprosy elimination in urban areas is challenged by
rapid increase in population, density
slum/shanty towns, poor living conditions - lack of basic services
- lack of funding
- patients not aware of havoc the disease can cause
leprosy stigma
- outcast of carriers, forced into leprosy isolation centres
- Separatio Leprosarium - Mass of Separation
- considered to be 'dead' in a social point of view
- thought that people who had leprosy were highly contagious .'. isolated
in Brazil
- many people still believe that leprosy is highly contagious (can be attracted through casual
contact, visiting a leprosarium or from sexual encounter)
- "falling of limbs disease" and is thought to be incurable
- Catholic church/Evangelical religions - form of divine punishment
- Afro-Brazilian religions - result of sorcery or witchcraft
- poorest people of the social 'class' - poverty increases susceptibility to leprosy
- do not want to let others know (hesitant to seek treatment or continue treatment that may
expose their condition to the public)
stigma in Leprosy
- physical outward appearance (disfiguration)
- progressive characteristics over time (may be chronic)
- communicability and disabling
- religious links
- poverty related (those in harsh conditions/slums)
- isolation and segregation
- myths and mysteries
- leads to discrimination
* stigmatized (anticipated - perceived, self - internal, enacted - discrimination - stigma)
* stigmatizers (enacted - discrimination, fear - of the disease, symbolic - associations,
anticipated - attitudes - stigma)
= participation restrictions, social exclusion, poor quality of life
- stigma Æ social exclusion Æ poverty Æ disability Æ stigma
- becomes vulnerable to other forms of disease
in India
- 'untouchable' people who do not belong to the caste (Dalits)
- people with leprosy are normally Dalits (the outcasts)
- discrimination legitimated by spiritual, legal, and moral sanctions of Dharmashastras
- graded inequality regulated by central values of purity/impurity maintained by the caste
(restricted food sharing, educational/occupational mobility)
- 160 million = 16% of total Indian population
- lacks/unrespected human rights
- forced to live separately from caste Hindus in rural/urban areas, usually in slums (rarely
recognized as formal settlements by the government)
Æ lack of basic services e.g. education, health, water, hygiene
in Korea
- abolished force isolation policies Æ made it possible for affected to become economically
independent in resettlement villages (Resettlement Village Policy, enacted 1963 to present)
- if achieved economic independence (through farming) - prejudice would decrease
Æ however, continued to persist - villages limited true social reintegration
- sterilization & abortion practices (1191 between 1949 - 1958)
- forced separation of children from leprosy patients
- forced isolation and relocation (continued until 1980s)
- obliged to work long hours, physically abused
- 1963, sent to Sorok Island until 2005
Community-based rehabilitation
- equalization of opportunities and social inclusion of all people with disabilities
- implemented through combined efforts of people with disabilities, their families,
organizations and communities, and relevant governmental and nongovernmental health,
education, vocational, social, and other services
- patients detected/treated early
- reduction of transmission of infection
- prevented development of deformities (access to treatment)
- stigma reduced further
* inclusion: in mainstream programmes and services, participation in society
* participation: involved in programmes themselves at decision-making level
* self-sufficiency: manage their own livelihood, cultural autonomy
* self-advocacy: speak up for themselves
* equity, empowerment, social justice
* reverse integration: self-care and self-help groups, rehab, leprosy villages/communities
* implement human rights perspective: self-organization, empowerment, attention for
structural discrimination and dis-empowerment
* increased attention: empowerment (literacy, self-esteem), poverty reduction (skills),
stigma and discrimination (discriminatory legislation, among service providers, self)
* research to improve services/effectiveness of interventions
Leprosy Elimination Action Programme (LEAP)
- practical and simple diagnostic tools (can simply be based on clinical signs)
- availability of an effective intervention to interrupt its transmission (MDT)
- single reservoir of infection (humans)
* integration = provide "comprehensive" essential services from one service point
- improve patients' access to leprosy services (timely treatment)
- remove "special" status of leprosy as a complicated/terrible disease
- consolidate substantial gains made
- ensure that all future cases receive timely and correct treatment
- ensure that leprosy is treated as a simple disease
* good coverage:
- health facilities are easily accessible to every member of the community
- health services are provided on a daily basis
- health workers are able to diagnose, cure, and provide basic information about the
- health facilities are equally distributed (urban/rural, male/female, poor/rich, etc)
- program with defined intervention to ensure the rights of people affected by leprosy
through sustained leprosy control measures and enhanced quality care with public health
care system
- implemented in States of Maharashtra and Chhattisgarh (India)
- selective special drives: creating mass awareness in local community members
- leprosy referral centres: train and equip health care providers with primary/intermediate
level with necessary skills and tools