Marring leishmaniasis: the stigmatization and the impact of cutaneous leishmaniasis in pakistan and afghanistan.

Symposium
Marring Leishmaniasis: The Stigmatization and the
Impact of Cutaneous Leishmaniasis in Pakistan and
Afghanistan
Masoom Kassi*, Mahwash Kassi, Abaseen Khan Afghan, Rabeea Rehman, Pashtoon Murtaza Kasi*
Department of Pathology, Bolan Medical College, Quetta, Pakistan
Cutaneous leishmaniasis or ‘‘Kal Dana’’ (‘‘the year-long sore’’), as it
is known locally, not only leaves a disfiguring scar on your face, but
permanently changes your perception of your own self (Figure 1).
‘‘This is not me,’’ said the woman fromChaman, as she explained her
encounter with the disease and the stigmatization associated with it.
This 28-year-old woman is a resident of Chaman, a town
located near the Pakistan–Afghanistan border, in the southwestern
province of Balochistan. For decades, Chaman has been a hub for
refugees crossing the Durand line; it also is one of the many
regions where poverty and lack of health resources show their true
victimization of refugees. One such case is that of this woman.
She belonged to a poor family; her father, the sole breadwinner
of the family, is a cattle rearer. She acquired her first lesion at the
age of 12; from thereon she was socially excluded and not allowed
to go to the local madrassah (an Islamic religious school). As she
grew older, multiple other lesions appeared on her arms and face
(the exposed parts of the body). She described this as a period of
grief for her, when her parents started isolating her from the rest of
the siblings to prevent further spread.
No treatment was acquired, due to the afflicting poverty and lack
of resources of the region. But the scar had a deeper impact on this
woman, as she is still unmarried in a community where early
marriages are common. She describes her fate as, ‘‘I will probably
get married to a limp ormentally disabled in a year or so; at least that
is what happened to all the other girls who had these marks.’’
Which Parts of the World Are Affected by
Cutaneous Leishmaniasis?
Globally, this disfiguring disease affects 1 to 1.5 million people.
Approximately 90% of these infections occur in Afghanistan,
Pakistan, Syria, Saudi Arabia, Algeria, Islamic Republic of Iran,
Brazil, and Peru [1]. With respect to Pakistan and its neighboring
war-torn country Afghanistan, the disease is endemic and the
incidence is rising [2–5]. Outbreaks have been seen in Afghanistan
and in refugee settlements along the border, including in
northwest Pakistan during and after the Afghani crisis, with
millions of refugees migrating into Pakistan [6]. In Pakistan
especially, patchy epidemics have been seen in various locations
from Balochistan to Multan to areas of Peshawar. In view of this
distribution, leishmaniasis is embedded in poverty and underpriv-
ileged areas with limited access to health care.
With women and children being particularly affected by this
marring disease, cutaneous leishmaniasis (CL) is now a major
public health issue with considerable stigma associated with it
[7–9].
How Is CL Spread?
Transmitted by the bite of the 2–3 mm-long sandfly (Figure 2),
the disease is caused by more than 20 different species of the
Leishmania parasite [1,10]. The various species that produce CL
include primarily L. major, L. tropica, and L. aethiopica in the ‘‘Old
World’’; and L. infantum, L. braziliensis, L. (V) peruviana, and L. (V)
guyanensis in the ‘‘New World.’’ In Pakistan and Afghanistan, the
most commonly reported species have been L. tropica [11,12].
How Is Social Stigma Created in Disease States?
As rightly pointed out by Peter J. Hotez in his recent editorial in
PLoS Neglected Tropical Diseases, some of the so-called neglected
tropical diseases not only cause ‘‘health and economic’’ effects but
also result in ‘‘horrific social stigma’’ [13]. Although the morbidity
associated with CL is not significant, and the disease is not lethal,
the disfigurement and resulting social stigmatization may cause or
precipitate psychological disorders, along with restricting social
participation of the individuals affected by the disease. Thus CL,
Figure 1. Marring leishmaniasis with lesions on exposed parts
of the face.
doi:10.1371/journal.pntd.0000259.g001
Citation: Kassi M, Kassi M, Afghan AK, Rehman R, Kasi PM (2008) Marring
Leishmaniasis: The Stigmatization and the Impact of Cutaneous Leishmaniasis in
Pakistan and Afghanistan. PLoS Negl Trop Dis 2(10): e259. doi:10.1371/
journal.pntd.0000259
Published October 29, 2008
Copyright: � 2008 Kassi et al. This is an open-access article distributed under
the terms of the Creative Commons Attribution License, which permits
unrestricted use, distribution, and reproduction in any medium, provided the
original author and source are credited.
Funding: No funding was available for this study. The articles needed for review
were purchased by the authors.
Competing Interests: The authors have declared that no competing interests
exist.
* E-mail: masoomkassi@yahoo.com (MK); pashtoon.kasi@gmail.com (PMK)
Editor: Juerg Utzinger, Swiss Tropical Institute, Switzerland
www.plosntds.org 1 October 2008 | Volume 2 | Issue 10 | e259

like other disfiguring diseases, not only affects the physical well-
being of the individual but also significantly alters their
psychological, social, and economic well-being [14].
A study conducted in five of the 14 districts of Kabul, the capital
of Afghanistan, showed that many erroneous beliefs exist about
CL, e.g., that ‘‘the disease can be transmitted by person-to-person
physical contact’’ (of 360 respondents, the most common answers
were ‘‘touching’’ [n = 86] and ‘‘sharing meals and household
goods’’ [n = 26]). The study also indicated that ‘‘affected people
are excluded from communal life’’ [15]. The level of exclusion
varied from ‘‘minor domestic restrictions’’ such as not sharing
plates to ‘‘severe physical and emotional isolation.’’
People with active lesions and scars have been victimized as
individuals and even in groups. Refugees from Afghanistan are
identified by their ‘‘trademark’’ scars left behind by the disease.
As seen in the scenario presented, unaffected people tend to
isolate affected people during the course of active lesions. Such
lesions are a source of apprehension and even disgust. This indeed
leaves a very strong impact on the individual as the scar lasts for
years (‘‘Kal Dana’’—‘‘the year-long sores’’).
Due to the lack of awareness about the transmission of CL,
people believe that the lesion is contagious. Patients are
unnecessarily excluded from social groups. Although awareness
is increasing, myths and wrong beliefs are still having an
overwhelming impact.
What Is the Impact of the Social Stigmatization on
Individuals and Populations?
Stigmatization occurs in all age groups. During adolescence and
childhood, parents tend to isolate their affected children from others
in the family, including themselves. This surely is a dark period for a
yet developing child who needs attention and care from the parent.
Name-calling is sometimes seen. Unfortunately, in places where
people are named at young ages according to some physical
disability, these names sometimes persist for as long as they live.
Women are particularly victimized as they are considered
unacceptable for marriage, sometimes by their own families [15].
Women are often separated from their children during the disease
by their family and not allowed to breast-feed. These women
usually suffer from depression and often anxiety.
The association of psychiatric disorders with CL has been
reported in a study done in Sanliurfa, Turkey. Patients with an
active lesion or healed scars showed increased rates of depression,
anxiety, and body satisfaction impairment, while a larger
decrement in the quality of life was reported in patients with
active lesions [16].
Psychiatric disorders, such as suicidal intentions, decreased self-
esteem, and those mentioned above have been known to be
attributed to other dermatological problems such as acne [17]. But
CL is particularly debilitating since the atrophic scar is carried for
years and often does not decrease in size, let alone disappear with
time. Furthermore, as noted above, the lesions occur on exposed
parts of the body, mainly the hands and face [18,19]. The facial
lesions, affecting prominent features such as the nose or ears, are
severely disfiguring and mould one’s personality, completely
changing one’s perception of self. It is also noteworthy that social
stigma is a significant factor contributing to psychiatric illness in
skin diseases, along with disfigurement and discomfort.
How Can Stigmatization Be Prevented?
We as authors believe that the attempt to decrease the burden
and eliminate the social stigma of CL will need a multifaceted
approach. Hence, learning from the experiences of similar
diseases, such as leprosy, that cause stigmatization would be of
immense value [20,21].
The first approach would be to target the disease itself. CL
would have to be eliminated or controlled. Measures to diagnose
and treat the disease should be made both affordable and
accessible. At the same time, measures to prevent CL should be
given due emphasis. In the absence of an effective vaccine, ‘‘the
first line of defense is to avoid sandfly bites’’ [22]. People need to
be educated about the transmission of the disease and the different
ways of controlling the vector. Many interventions, such as house
spraying, insecticide-impregnated curtains, and insecticide-treated
bed-nets, have been proven to be effective [23–25]. The need of
the hour is to educate people about these measures, which are
effective not only for CL, but also for other vector-borne diseases,
such as malaria, that are endemic to the region. A participatory
approach that mobilizes the community should be utilized when
implementing any public health control measure in this region.
Involvement of community leaders is an important feature, and
they should be taken into confidence in implementing any
interventional program. This would lead to greater compliance
and sustainability of the intervention.
Secondly and perhaps even more importantly, there is a
pressing need to educate people. As authors, we believe that this is
very crucial. Unless people are educated (not merely literate), not
only will the stigmatization of people with CL continue, but other
problems, such as stigmatization and isolation of people with HIV
or those who are addicted to drugs, will continue to prosper. As
suggested by Reithinger and colleagues, a disease-specific health
education strategy would have to be developed, thoroughly tested,
and then implemented [15]. With little or no formal education
available, especially to women in worn-torn Afghanistan, aware-
ness regarding diseases endemic to the region needs to be
increased. Programs aimed at promoting preventive measures
such as use of insecticide-treated bed-nets or indoor house
spraying with residual insecticides should be coupled with
education and increasing awareness among the general public.
Posters and public health messages need to be everywhere in the
country. Local general practitioners and other health care
professionals should come forward and play an active role in
educating the public. With media now available almost every-
where in the country and in every language, this media platform
should be used more effectively to increase public awareness of
Figure 2. Sandfly—The vector of cutaneous leishmaniasis.
doi:10.1371/journal.pntd.0000259.g002
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diseases. School-based education should not be forgotten—it is
equally if not more important to educate the youth to reduce the
burden of stigma of CL and other diseases [26]. Thus, education
and media campaigns would not only help in counteracting false
beliefs regarding CL and other diseases, but would also raise
awareness about new advances in the field.
However, it should be remembered that extensive literature on
attempts to reduce stigma in other disease states has shown that
knowledge/education alone is not enough. A multifaceted
approach is what is needed, including increasing contact between
people affected by CL and the community. The preventive and
even the management programs should be at the level of the
community, as such community-based programs would help
‘‘eliminate the social stigma in the patients’ families’’ along with
‘‘educating the community’’ about CL [27].
Finally, socioeconomic development has to coincide with all
these measures. Many neglected tropical diseases, especially some
of the infectious diseases, were eliminated in the West long before
effective treatment regimens were in place, mainly owing to
socioeconomic development [28]. We must also empower people
affected by CL, especially women, if their social stigmatization is to
be reduced. The governments of both Pakistan and Afghanistan
need to invest more into their education and health. The amount
invested at the moment is petty when we compare Pakistan and
Afghanistan to other neighboring countries. Pakistan faces many
political and other social hurdles, and the problems are far worse
in the neighboring war-torn Afghanistan. Although the obstacles
are numerous and the task Herculean, effective strategies need to
be applied and planning needs to be done, to improve the
socioeconomic conditions of the people of these two countries.
With respect to stigma associated with CL and other diseases, it
is very unfortunate that with effective diagnosis, treatment, and
prevention strategies available, the disease still affects thousands
across the country. The stigma further compounds the morbidity
of the disease and leads to unfortunate psychological and social
consequences like in the case of the woman from Chaman. We
sincerely hope that this will improve in the very near future.
Acknowledgments
We are deeply indebted to the patients discussed in this paper. A written
informed and understood consent was obtained from the woman and her
family and they were fine with the details of her case being discussed in the
public domain, provided that her name was not used.
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Box 1. Learning Points
N Globally, 1 to 1.5 million people are affected by marring
cutaneous leishmaniasis, especially women and children.
N In Pakistan, CL is endemic and the incidence is rising,
with the condition being far worse in neighboring war-
torn Afghanistan.
N The marring and disfigurement that lead to social
stigmatization are a cause for concern. Educating the
public is key to removing the disease’s stigma.
N Disease-specific health education programs need to be
coupled with other preventive and management pro-
grams in endemic countries.
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