Epilepsy: Stigma and Management
People With Epilepsy (PWE) and their families often face a very common aspect of this neurological disease epilepsy, known as Epilepsy Stigma (ES). ES is considered to be one of the most important factors that have a negative influence on PWE. It is a commonly encountered global issue among PWE in all cultures. ES may have deleterious effect on the patients life more than the disease of epilepsy itself. It is the prime duty of all health professionals to try and manage ES in order to improve the quality of life of PWE not only by controlling the seizures, but also by fighting the myths and disbelief of stigma and managing the disease with a better approach. Stigma in PWE can be encountered and dealt with by diverse specialties in health profession including physicians, surgeons, social workers, psychologists, psychiatrists and nurses. Unfortunately this important issue of ES is addressed primarily in specialized journals like Epilepsy Research, Epilepsia, Epilepsy and Behavior, Seizure and Social Science Medicine which are read by professionals interested mainly in epileptiology or social sciences, whereas the actual problem of ES and its management remains neglected and does not reach the common readers and the non-scientific communities which form a major part of the society in any culture or country. Thus, there is an obvious need that this issue should be addressed in simple language in journals targeting readers of different specialties and interests through publishing articles on ES in popular magazines and dailies of the local areas globally.
July 30, 2010; Accepted: August 07, 2010;
Published: April 29, 2011
Epilepsy is very often a disabling condition, rendered especially disturbing
because of its unpredictability and its seriousness for being a common neurological
disorder worldwide. It directly affects around 50 million people, the majority
of whom (80-85%) live in resource-poor countries (Radhakrishnan,
2009). Although, in recent decades scientific advances in different fields
of epileptiology have witnessed modern developments such as neuroradiology,
recent antiepileptic drugs and genetics, not much has been achieved in dispelling
the stigma of epilepsy (Bleassel, 2005). Furthermore,
despite the advances made in research and epilepsy education campaign, there
remains significant misinformation in ES (Lo et al.,
2010). The ES is a major burden of epilepsy and by spoiling the patients
identity with its psychosocial problems, may have burden on the patients
life which is more crippling than the seizures itself. Despite the changes in
public attitude, epilepsy may evoke similar response to rejection like other
chronic disorders, which are deeply stigmatizing such as AIDS (Jacoby
et al., 2005a). Epilepsy represents a source of grief and not just
a clinical condition, but also a social and psychosocial outcome (Jacoby
et al., 2004; Lim et al., 2009). Seizures
are generally benign and can be controlled in PWE. The ES still affects the
lives of PWE even among those whose epilepsy is controlled (Tekle-Haimanot
et al., 1991; Dawkins et al., 1993;
Collings, 1994; Gambhir et al.,
1995; Kleinman et al., 1995; Placencia
et al., 1995; Nyame and Biritwum, 1997; Bener
et al., 1998; Baker et al., 2000,
2005; Al-Adawi et al., 2001;
Baker, 2002; Austin et al.,
2002; Reis and Meinardi, 2002; Morrell,
2002; Kamgno et al., 2003; Dilorio
et al., 2003; Ndoye et al., 2005;
Baskind and Birbeck, 2005a; Diamantopoulos
et al., 2006; Theodore et al., 2006;
Lim et al., 2009; McCagh
et al., 2009; Rafael et al., 2010).
From the available literature it appears that there is a surmounting need to
promote epilepsy awareness programs for increasing public knowledge about epilepsy
with the aim of reducing negative attitude towards ES. Furthermore, it is important
for all health professionals to know about the different issues of ES and help
in its reduction. By reviewing stigma in epilepsy and its management, it is
hoped that this article will help the health professionals to participate in
designing comprehensive epilepsy care models for achieving reduction in heavy
burden that ES casts on the lives of PWE.
Background of ES: The most pathetic aspect of epilepsy is that unlike
many other diseases such as hypertension, diabetes or cardiac disorders, the
symptoms and signs of epilepsy are curiously unhidden. Furthermore, epilepsy
is unpredictable and not easy to understand by the terrified watchers, as to
why and what seemed to be the reason for a normal person to behave in a very
strange manner, which makes the seizures look like chaos against the cultural
norms. The PWE are perceived as creating ambiguity in their social interactions
and so threaten the social order, by being unpredictable and out of control.
By losing control on themselves, PWE are seen as reverting to primitive acts
and hence represent anomic terror to those without epilepsy (Bagley,
1972) and they are seen as uniquely dangerous. It is a common phenomenon
in many accident and emergency departments to see that a patient brought in
for management of generalized tonic clonic seizures, seems to the general watchers
including physicians and nurses like a crisis and peace is not restored until
the seizures are suppressed, even though they might be a psychogenic non-epileptic
seizures. Even now till to date, PWE are often perceived as violent (Kate
Collins et al., 2007).
The history of epilepsy goes back to more than three to four thousand years
of ignorance, superstition and misconceptions even before Babylonic Era (Temkin,
1971). The word epilepsy comes from another Greek word epilambanein which
means to seize, attack, possess or overwhelmed by surprise, implying supernatural
power as a cause of epilepsy. It is interesting to know that sara the synonymous
word for epilepsy in Arabic, Persian and also Turkish means falling as if struck
carrying the same implication of an outside force (Obeid,
2008). For years many religions have regarded PWE as being possessed and
epilepsy is considered as contagious even in the 18th century (Temkin,
1971). The medical understanding of epilepsy was recognized at the end of
the 19th Century when epilepsy was finally confirmed at least in developed world
as neurologic condition; in spite of the fact that in his writing on falling
sickness, Hippocrates (400B.C.) stated that epilepsy is not a sacred disease,
but a disorder in the brain (Temkin, 1971).
Extensive studies worldwide showed that enough knowledge about epilepsy is
lacking especially in poor income countries (Dawkins et
al., 1993; Collings, 1994; Kleinman
et al., 1995; Bener et al., 1998;
Baskind and Birbeck, 2005b; Birbeck
et al., 2007). In many African countries, still epilepsy is considered
as contagious and supernatural power is quoted as its cause (Tekle-Haimanot
et al., 1991; Rwiza et al., 1993;
Nyame and Biritwum, 1997; Reis and
Meinardi, 2002; Kamgno et al., 2003; Baskind
and Birbeck, 2005a). In some regions in India, epilepsy is confused with
a mental illness and the law equates epilepsy with temporary insanity till recently
(Mani, 1997). It is surprising that misconceptions about
epilepsy are still present in developed countries. In a recent study in USA,
out of 19,441 high school adolescent, 22% of them were not sure whether epilepsy
was contagious in nature (Austin et al., 2002).
Minorities in USA still believe in the supernatural etiology of epilepsy (Theodore
et al., 2006). Even in the 21st century in UK a substantial number
of the public regards epilepsy as a mental rather than physical disease (Jacoby
et al., 2004). The lack of accurate knowledge about epilepsy is found
not only in the public, patients and their families but at times even among
health professionals (Al-Adawi et al., 2001;
Baskind and Birbeck, 2005b; Chomba
et al., 2007; Obeid, 2008). Misconceptions
about epilepsy have a major role in ES production whether perceived, enacted
or courtesy ES. Though, the scientific explanation of epilepsy is gaining ground
in developed countries, but still it is not the case in poor-income countries.
There are differences in the level of knowledge about epilepsy among different
countries, but this level varies within the same country depending on the culture,
whether it is a rural or urban area and also on the socio-economic factors (Baker
et al., 2000, 2005; Doughty
et al., 2003; Jacoby et al., 2005b;
Theodore et al., 2006; Wang
et al., 2008; Onwuekwe et al., 2009;
Rafael et al., 2010).
The different media still give misinformation about epilepsy which influences
the public perception (Krauss et al., 2000; Baxendale,
2003; Kerson and Kerson, 2006; Caspermeyer
et al., 2006). Stigmatizing language is used in printed materials
which is reflected in a recent study in which 30% of the stories about epilepsy
embrace this language which contains either exaggeration or inaccuracies (Krauss
et al., 2000; Caspermeyer et al., 2006).
The movies also portray epilepsy in a way that highlights myth, misconception
and misunderstanding (Baxendale, 2003; Kerson
and Kerson, 2006). In the era of internet many sites are also spreading
misconceptions and misunderstanding regarding etiology and treatment of epilepsy.
Some Arabic language sites display misinformation incriminating supernatural
power of Jinn as a cause for epilepsy and also advice to use funny treatment
like garlic (Obeid, 2008). Also, the websites in western
world are not providing the standard medical information about epilepsy (Burneo,
TYPES OF EPILEPSY STIGMA (ES)
Epilepsy associated stigma has long been recognized as a significant cause
of psychosocial morbidity for PWE. The most amazing aspect of ES is its wide
range of definitions (Doughty et al., 2003).
The origin of the word Stigma comes from Latin word Stigmat which means mark
or brand and from a Greek word stizein, that means to tattoo (Morrell,
2002). The concept of stigma was introduced by Hoffmann in 1963 who defined
stigma as loss of status and power resulting from separation of those stigmatized
from the general population because of a characteristic that has been culturally
defined as different and undesired. It includes disapproval and rejection from
others and it is an attribute that is deeply discrediting and hence leads to
spoiling of the individual's identity that ultimately disqualifies him/her from
social acceptance. Another widely accepted definition defines Stigma as a social
process or related personal experience characterized by exclusions, rejection,
blame and devaluation (Weiss and Ramakrishna, 2006).
Based on these definitions, ES has been divided into three kinds of ES.
Perceived ES: It refers to the feeling of shame of being epileptic with
its associated oppressive fear of encountering enacted stigma (Morrell,
2002; Doughty et al., 2003; Rafael
et al., 2010). It is commonly associated with illness and medical
conditions that have visible signs or arouse feeling of dread and fear (Goffman,
1963). The PWE assume that from their prevailing illness they will be devaluated
and discriminated. Thus, such misleading notion compels them to adopt strategies
like social withdrawal and secrecy that inflicts negative impact on their Quality
of Life (QoL) and hence reinforces in them the feeling of perceived ES.
Enacted ES: Refers to actual episodes of discrimination against PWE
only on the pretext that they suffer from epilepsy (Morrell,
2002; Doughty et al., 2003). The legacy of
the idea that epilepsy is a product of sin and evil possessions means that the
cause of epilepsy is ambiguous and the seizures present far greater danger to
those with epilepsy than the non-epileptics. People believe in the idea of epilepsy
being a contagious and this idea is still prevailing in poor and developing
countries (Rwiza et al., 1993; Jacoby,
1994; Baskind and Birbeck, 2005a, b;
Ndoye et al., 2005; Nubukpo
et al., 2006).
Courtesy ES: It is a kind of stigma that affects the whole family members
and even those who have an association with the patient (Kleinman
et al., 1995). West reported that parents with children with epilepsy
often experienced a sense of shame and their child was seen as conferring shame
on the whole family by virtue of being odd (West, 1979).
Kleinman described that in the Chinese culture, the moral weight attached to
epilepsy, threatened familial aspiration and life chances and because of family
disgrace, PWE are kept at home and their diagnosis is kept secret (Kleinman
et al., 1995).
These three kinds of ES act dynamically and synergistically with each other and lay a major hurdle in the path of managing epilepsy treatment.
PREVALENCE OF ES
Developed and developing countries have geographic, economic and social differences
and these variations incur a major influence upon the prevalence and incidence
of ES worldwide. Measuring the prevalence of ES by direct questionnaires or
with instruments is a difficult target to achieve. ES is a complex phenomenon
which prevails worldwide, with regional, inter-and-intra-regional and cultural
variations (Jacoby et al., 2005a; Baskind
and Birbeck, 2005a, b; Ndoye
et al., 2005; Theodore et al., 2006;
Tran et al., 2007; McLaughlin
et al., 2008; Onwuekwe et al., 2009;
Rafael et al., 2010; Whatley
et al., 2010). Most researches were done in North America and Europe
with few from low-income countries. The published works from Northern areas
place greater emphasis on perceived ES, whereas studies in the Southern hemisphere
e.g., Africa emphasize on enacted ES (Reis and Meinardi,
2002; Rafael et al., 2010). To have accurate
knowledge about the prevalence of stigma, a cross-cultural research may benefit
from a multi-disciplinary team from various cultures, to develop a common frame
and shared research tools, which may allow for contextual and cross-cultural
adaptations (Reis and Meinardi, 2002). In USA and Europe,
some studies found that about 18% of PWE felt severely stigmatized with some
variations among countries studied (Baker et al.,
2000; Morrell, 2002; Doughty
et al., 2003; Theodore et al., 2006;
Varley et al., 2010). In developing countries,
ES is not yet fully explored, but from the published work, it seems that at
least more than a 1/3 of PWE may face stigma, but it may also be as high as
60% (Kamgno et al., 2003; Baker
et al., 2005; Birbeck et al., 2007;
Youssef et al., 2009; Radhakrishnan,
A complex controversy exists in the published literature for the prevalence
of ES in general. Most of the current work quote young age as the onset of epilepsy
and furthermore, duration and frequency of seizures, lower level of education,
presence of seizure related injuries; encountering acts of discrimination and
generalized tonic clonic seizures, are the main factors that play a significant
role in the magnitude of ES (Chaplin et al., 1992;
Jacoby et al., 1996; Moran
et al., 2004; Whatley et al., 2010).
A recent data revealed that experience of actual discrimination, introverted
personality, problem solving capabilities, controllability and emotional state
were independently correlated with feeling of ES beside psychologic dysfunction
(Lee et al., 2005). There is an association between
ES and employment as unemployed people tend to report higher level of ES (Dilorio
et al., 2003; Parfene et al., 2009).
Injuries associated with epilepsy were significantly related to ES scale (Baker
et al., 2005). Burns are marks which in some African countries are
very stigmatizing and some traditional healers link the burns with the patient
having a sealed fate (Baskind and Birbeck, 2005a, b).
All these controversies play a significant obstructive role in compiling the
real data of epilepsy and ES and need to be addressed in a more organized manner
with a global consensus on the issue.
IMPACT OF ES ON PWE
Quality of Life (QoL): Although, QoL and psychosocial functions have been
extensively investigated, there is a lack of standardized approach towards such
investigations (McLaughlin et al., 2008). Therefore,
it makes it extremely difficult to summarize and indicate what measures should
be used for improving QoL of PWE. Variations in the sociocultural attitudes
in the country of residence of PWE and the patients themselves, make it difficult
to determine the magnitude of the impact of psychosocial problems that the PWE
encounter (Levin et al., 1988; Jilek
Aall et al., 1997; Collings, 1994;
Kleinman et al., 1995; Nyame and Biritwum, 1997;
Djibuti and Shakarishvili, 2003; Baker
et al., 2000, 2005; Jacoby
et al., 2005a; Tran et al., 2007;
Reisinger and Dilorio, 2009; Smith
et al., 2009; Rafael et al., 2010).
The psychosocial impact affect PWE in self-esteem, family dysfunction; social
capital and impairment of QoL (Collings, 1990; Chaplin
et al., 1992; Wagner and Vickrey, 1995; Jacoby
et al., 1996; Baker et al., 1997;
Buck et al., 1999; Suurmeijer
et al., 2001; Jacoby, 2002; Bishop
and Allen, 2003; Moran et al., 2004; Lee
et al., 2005; Tracy et al., 2006;
Sherman, 2009; Smith et al.,
2009; Rafael et al., 2010). The ES in PWE
expose them to health hazards and reduce their access to treatments (Buck
et al., 1997; Aylward, 2008; Varley
et al., 2010).
Marital status: The rate of marriage is comparatively lower in PWE than
the general populations which has been demonstrated in many studies with highest
rate being reported as 58.9% from Cameroon (Nyame and Biritwum,
1997; Shackleton et al., 2003; Wada
et al., 2004; Baskind and Birbeck, 2005a,
b; Agarwal et al., 2006;
Santosh et al., 2007). The lower marriage rate
is related mainly to unemployment, but also the attitude of the public towards
PWE plays a significant role also. The divorce rate is higher in PWE compared
to control and the main cause is the fact that some couples do not disclose
their disease to their future partners prior to marriage (Santosh
et al., 2007).
Employment status: The rate of employment is also very low among PWE
and several factors have been implicated as the cause of high unemployment rate
in PWE which includes patient personality, education, intelligence, age, psychosocial
and neuropsychiatric functions (Smeets et al., 2007).
In spite of the availability of literature on this issue, it has not been fully
investigated and the rate of unemployment ranges between 12-60% (Smeets
et al., 2007). However, many studies have confirmed that unemployment
and underemployment rates are generally higher in PWE than in the general population
(Smeets et al., 2007; Parfene
et al., 2009). In a recent study from the United States, it was found
that a high self-perceived importance of work and decreased fear of workplace
discrimination, are significantly associated with better employment rate in
PWE (Bautista and Wludyka, 2007; Parfene
et al., 2009). To date many employers and even workmates are unhappy
to work with PWE and hence a significant number of PWE conceal their disease
(Harden et al., 2004; Parfene
et al., 2009). Although, there is some improvement in employer's
attitude in the West, a study in UK indicates that employers still have a high
concern regarding occurrence of work-related accidents in employing PWE (Jacoby
et al., 2005b).
There is a need for specific rehabilitation programs to help PWE to find and
maintain employment which should focus on increasing self-efficacy and coping
skills of PWE (Smeets et al., 2007). In low income
countries such programs may not be feasible; and it is of prime importance to
focus first on seizures control as many studies indicate that unemployment is
higher among patients with more frequent seizures (Smeets
et al., 2007).
Education level: The level of education in PWE is also generally low
and this is true universally, but it may show variations between countries and
also among communities. Even in Europe and America, the academic achievement
of PWE is at a lower level (Fisher, 2000; Birbeck
and Kalichi, 2003; Morrell, 2002; Baskind
and Birbeck, 2005a, b). The situation is alarmingly
dismall in low-income countries, as in some communities of these countries,
children are barred from going to school as they may be considered mentally
feeble or the parents are under the fear that their child with epilepsy may
sustain injury or even die outside home (Morrell, 2002;
Wagner et al., 2009). The school drop out rates
of children with epilepsy is higher in low income countries (Gamage,
2005). A seizure occurring at school results in poor self perception and
reduced social interaction beside its fueling ES courtesy in the family. Teachers
and parents may also have dismal opinions about capabilities and behavior in
children with epilepsy (Pala and Vankar, 1997; Sanya
et al., 2005; Fernandes et al., 2007).
Learning disabilities occur in a significant portion of children with epilepsy
and the cognitive impairment related to antiepileptic drugs may adversely affect
the academic achievement in PWE (Besag, 2006). Experimentally
induced epilepsy in laboratory models have also established the fact that epilepsy
causes learning disabilities and cognitive impairment due to neurodegenerative
changes in the hippocampus areas of the brain (Tariq et
Depression level: Depression is the major psychiatric problem in PWE.
It is a mood disorder characterized by loss of energy, interest, feeling of
guilt, difficulty in concentration and thoughts of death, hopelessness or even
suicide (Jackson and Turkington, 2005; Reisinger
and Dilorio, 2009). The prevalence of depression is variable with figure
quoted between 20-55% which is higher in hospital based studies than the community
studies (Jackson and Turkington, 2005; Baker,
2006). Depression can be of reactive nature due to the many social ills
of epilepsy particularly social ES, underemployment and education problems in
PWE. Many studies have indicated that death by suicide is higher in PWE than
in general population with variable incidence in different countries and the
higher being reported from Denmark as compared to UK (Baker,
2006; Bell and Sander, 2007). Depression has a significant
impact on QoL in PWE, more than the burden of seizures itself (Bishop
and Allen, 2003; Sherman, 2009; Whatley
et al., 2010).
Psychiatric level: The increased incidence of neuropsychiatric features
of epilepsy can be due to seizures, their underlying etiology and the associated
psychosocial effects, which may lead to functional limitations (Smith
et al., 2009; Whatley et al., 2010).
The effects of ES in addition to the adverse effects of antiepileptic drugs
also contribute to the psychiatric disorders in PWE (Besag,
2006; Varley et al., 2010).
Anxiety level: Anxiety occurs in 10-25% of PWE and it may be due to
the unpredictable nature of seizures and perceived loss of control, both of
which are related to the perceived ES (Jackson and Turkington,
2005). Physicians treating PWE should not only focus on seizure control,
but it is of vital importance for them to recognize and look for any symptoms
of anxiety or depression as well and treat them (Reisinger
and Dilorio, 2009).
MANAGEMENT OF ES
The two major aspects of managing and fighting ES are:
||Firstly, prevention of epilepsy should be the prime aim and its reduction
also if it already exists
||Secondly, dissemination of accurate knowledge about epilepsy is the most
important way to fight ES. This should be addressed to all individuals including
the patients, health caretakers, families and friends of PWE, educators,
the public at large, potential employers, health insurance, the policymakers
and the media of all kinds. The factors that can markedly reduce the burden
of ES and the disease itself should be given priority in the following preferential
order for its management:
The early control of epilepsy: Majority of PWE (70-80%) can live a normal
life since an effective control of seizures leads to reduction of ES especially
the perceived ES which is significantly related to the seizure frequency (Jacoby,
1992; Baker et al., 1997; Moran
et al., 2004; Sherman, 2009; Whatley
et al., 2010). Control of epilepsy is still a real problem in poor-income
countries as around 90% are not receiving treatment (Scott
et al., 2001; Radhakrishnan, 2009). The treatment
gap as defined by a workshop of ILAE is the difference between the number of
people with active epilepsy and the number whose seizures are being appropriately
treated in a given population at a given point of time, expressed as a percentage
(Meinardi et al., 2001; Theodore
et al., 2006). The treatment gap in poor income countries is due
to financial inaccessibility to anti-epileptic drugs, limited human and technical
resources for PWE, illiteracy in addition to cultural background, since some
communities do not realize the existence of medical treatment for epilepsy disorder
(Radhakrishnan, 2009). The evidence shows that treatment
and good control over seizures can allow the epilepsy patients to participate
in both contact and non-contact sports without harmfully affecting seizure frequency
(Arida et al., 2008). Furthermore, experimental
research in animal models should be encouraged by all government agencies for
developing new drugs for epilepsy in addition to the available drugs. Recently,
pentoxifylline has been reported to have neuroprotective effect in ameliorating
status epilepticus (Tariq et al., 2008). Such
studies will be of immense value in managing epilepsy.
Education: Education is the most important tool to fight ES. For stigmatization
to be consistently effective, the stigmatized person must hold the same beliefs
as the society that devaluates him. It is known that most adults with epilepsy
often have insufficient knowledge about their disease and its treatment, despite
large amount of available knowledge (Dawkins et al.,
1993; May and Pfafflin, 2002; Smith
et al., 2009). Physicians usually do not have the time in the clinic
to discuss all aspects of epilepsy with their patients, a large section of who
are unsatisfied with such attitude (Prinjha et al.,
2005; Sherman, 2009). Improving the knowledge about
epilepsy has resulted in improvement of attitude towards PWE (Gutteling
et al., 1986; Mirnics et al., 2001;
Kim et al., 2003; Aylward,
2008; Wang et al., 2008; Youssef
et al., 2009). The public education can be delivered through all
media venues, by lectures in schools, churches, mosques and social gatherings.
This can be done by health professional organizations or any health professional
with adequate knowledge about epilepsy. Mothers with offspring with epilepsy
should be given the necessary knowledge about different aspects of epilepsy
and should be encouraged to help their children to have a normal life as the
child self-esteem and confidence are affected by felt ES which is linked to
mothers attitude that can be of great help in fostering self-acceptance,
self confidence and self worth which helps to prepare the child in dealing with
his feelings and attitudes of others. Diseases of children are always viewed
with eyes of their parents. Parents can be ES coaches by fostering ES in their
children. Educational programs have been shown to improve patient's knowledge
and understanding of their epilepsy, its treatment and psychosocial consequences
of having epilepsy (May and Pfafflin, 2002; Wang
et al., 2008). By aggressively educating the youth, there is a hope
to change the societys perception of epilepsy within the next generation
(Coelho, 2006; Youssef et al.,
Self advocacy: Physicians, health professionals and epilepsy organizations
should help PWE to be self-advocate so as to gain self-esteem (Aylward,
2008). Health providers can be an important advocate for their patients.
As the essence of discrimination is forming opinions about others based not
on individual merits but on membership of a group with certain characteristic,
a successful career patient with epilepsy can be an effective advocate to dispel
this myth (Rafael et al., 2010). The formation
of stimgaliogy as a new science is needed as suggested in the conference held
in USA (Keusch et al., 2006). The role of ILAE\IBE\WHO
as forefront leaders to take epilepsy out of shadow needs the support
of governments to achieve this golden goal. The demonstration projects supported
by these organizations in North America, China, Argentina, Senegal and Zimbabwe
are an example of this useful and effective method which will help in promoting
positive attitude towards PWE which eventually will lead to minimize ES (Theodore
et al., 2006; Aylward, 2008; Wang
et al., 2008).
Prioritization of epilepsy campaign: In poor income countries epilepsy
is not recognized generally as a public health priority, as the low budget for
health is directed to conditions like infections which are perceived to be of
a higher priority than epilepsy (Scott et al., 2001;
Radhakrishnan, 2009). The recent data of ILAE/IBE/WHO
global campaign against epilepsy survey reinforces the need for urgent substantial
and systematic action to enhance resources for epilepsy care especially in low-income
countries (Meinardi et al., 2001; Theodore
et al., 2006; Radhakrishnan, 2009). The campaign
of ILAE/IBE/WHO launched in 1997 to take epilepsy out of shadow through its
different branches and organizations is the important leader in fighting ES
(Dua et al., 2006). The collaborative research
on ES started by a panel of experts from UK, China, Vietnam, Amsterdam, US,
GCAE, WHO is launching a research which aims at developing a culturally appropriate
approaches to reduce ES and discrimination associated with epilepsy in developing
world which entails finding a cross-culturally relevant theoretical model of
ES (Caprio and Hauser, 2009).
Legalizing the rights of PWE: Laws should be made to protect the rights
of PWE against any form of discrimination. This is of paramount importance in
employment, as PWE still encounter difficulties in finding a job (Kobau
and Price, 2003; Harden et al., 2004; Smeets
et al., 2007; Bautista and Wludyka, 2007;
Parfene et al., 2009). The past history of epilepsy
had witnessed many legal restrictions across the world which has shown a significant
improvement (Mani, 1997; Jacoby,
2002). In spite of this improvement, still restrictions are currently present
like employment in certain jobs such as teaching, police force, fire-brigade
and prison services on the ground that PWE may be a risk to the health and safety
of other persons and these restrictions are not evidence based (Jacoby,
2002, 2008). The same notion applies to driving
license which is not uniformly and scientifically addressed (Jacoby,
In conclusion, it can be summarized that myths, misconceptions and misunderstandings
about epilepsy continue even to date. Programs aimed at increasing knowledge
and reducing negative public attitudes should be enhanced. This aspect of fighting
and managing ES is important to promote better de-stigmatization campaigns.
Various media campaigns, especially video-sharing websites like You Tube, have
the potential to remediate the significant misinformation and persistent ES
surrounding epilepsy (Lo et al., 2010). Developing
a comprehensive epilepsy care model with combined efforts and consensus of all
global agencies along with vigorous campaigning and advertisements, could play
a very vital and significant beneficial role in educating the common public
about positive features of life with epilepsy. Furthermore, this will help in
informing primary and secondary physicians also, about the current trends in
the management of epilepsies and scaling up routine availability of low-cost
antiepileptic drugs globally.
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