Epilepsy is a worldwide problem with a major impact on the personal, family, and social life of the affected individual and also on the society. The reported prevalence rates of epilepsy in various epidemiological studies vary from 1.5 to 19.5 per 1,000 population with higher prevalence rates in developing countries.1-5 The average accepted prevalence rate is ~ 5 per 1000.2 Stigmatization, low literacy, sub-optimal employment, and social and economical marginalization are the commonly faced problems by people with epilepsy, both in developed and developing countries. This attitude of the public significantly contributes to high rates of anxiety, depression, dejection, feeling of deprivation, and low self-esteem in people with epilepsy.6,7 This is much more so in developing countries.8-11 Even in the present era when the civic sense of tolerance and acceptance to accommodate people with handicaps is high, people with epilepsy are socially isolated and discriminated.12,13 However, in the developing countries this social isolation and discrimination is much less when compared to people with acquired immune deficiency syndrome (AIDS) or leprosy.14 The encouraging aspect is, increasing acceptance of epilepsy among people with high level of eduction.15
The 'tropical countries' or 'developing world' represents a large, kaleidoscopic group of nations with varied economies16 and many cultures and sub-cultures within one country. The population density, some social indicators related to literacy, unemployment, income, and economic activity are similar.17 Here people with epilepsy encounter several significant barriers. These include: (1) inadequate manpower with expertise in clinical neurosciences; (2) regular availability of antiepileptic drugs (AEDs); (3) substandard drugs; (4) meager health budgetary allocation, epilepsy being a low priority; and (5) inadequate infrastructure in regards to communication and transportation. In addition, poor drug compliance related to cultural beliefs and beliefs in culture bound traditional systems of medicine are also likely to have a negative impact.
Over all the level of knowledge and awareness of epilepsy is poor in developing countries. Many might have heard or read about epilepsy, but a majority lack adequate information about its cause, nature and treatment. Even among parents of a child with epilepsy, understanding of the disorder is inadequate and negative.18 The knowledge of epilepsy is also low among highly educated groups,19-21 professors,20,21 and school teachers.22,23 In a study in Senegal, 25% of primary school teachers considered epilepsy as a contagious disease.23 The perception was similar among medical students in Nigeria.24 In Sri Lanka, knowledge is found to be deficient in many aspects among teachers, school children, university/medical/nursing students, participants attending adult education programs, and army personnel.10 In India, of the 92% who have heard or read about epilepsy, 85% are unaware of the cause of epilepsy and 20% are ignorant about its treatment.25 The knowledge of epilepsy in Africa is inadequate among both rural26 and urban population.27
When compared to developing countries knowledge about epilepsy is much better in developed countries and varies from 50% to 97%.28-30 However, in some studies marked deficiency was observed in respect to the cause and treatment of epilepsy. In Finland, of the 95% who have heard or read about epilepsy, only 15% were familiar with the cause.26 A survey among the junior medical staff of a teaching hospital in Australia observed negative attitude and also lack of knowledge about epilepsy.31 In a survey in Wales, 34% general practitioners lacked confidence about their knowledge of epilepsy.32
Awareness of epilepsy amongst Chinese is much more than that observed in developed countries, but the attitude is more negative.33 The favorable attitude observed among people of Taiwan is attributed to the western culture and socioeconomic system.34 In India although the awareness of epilepsy has been found to be comparable to that in the western countries, the attitudes are much more negative.25 A positive attitude can be developed in the community if people are well informed about epilepsy. A research among teachers in Zimbabwe demonstrates the same.35
In developing countries epilepsy still remains in the shadows of myths, superstitions and stigma. Fear, shame and mysticism surrounds epilepsy even today. Families of patients with epilepsy often make references to black magic, witchcraft, voodoo or evil/ancestral spirit possession, a divine punishment, and poisoning.26,27,36,37 The mysterious stormy events of an epileptic seizure have compelled many to associate it with a supernatural cause.36-39 In Pakistan, only 3.1% population surveyed associated epilepsy to a supernatural cause as against 71% in Turkey.40 In traditional Africa epilepsy is linked to the evil eye. The curative rituals range from complete shaving of entire body with glass and affliction of burns to banishment of the person causing the evil influence.38,41 The saliva, flatus, breath, and other secretions of the patient are thought to be highly contagious.38,42 Epileptic seizure is thought to signify escaping of a demon or an evil spirit and hence one is not allowed to touch a convulsing person.9,27,43 The notion that epilepsy is a contagious disease and spreads by contact still persists and person with epilepsy is isolated or avoided.24,26,27,36 In the Moorish population of Central African Republic, there is a belief that wrong food or excessive eating causes epilepsy.44 Abstinence from certain foods and use of laxatives to purge the evil spirits is a way of treatment.38,44 Barbaric practices exists in Nigerian backwoods and other African countries to bring out the patient from the post-ictal stupor state.9 These practices include thrusting a limb into boiling water or over a flame and instilling pepper in the conjunctival sacs which would only add to the physical suffering and pain of the seizures. In Central African Republic, various parts of the body of patients with epilepsy are burnt in an attempt to remove the occult, supernatural cause; a reflection on the immense physical and moral suffering of the epilepsy patient.38,44 Holy Man of rural Pakistan claims to specialize in exorcising the evil spirits responsible for epilepsy. Person with epilepsy is chained to a tree and deprived of food. Patients who are already on treatment and seeking added 'spiritual' help are denied medications, many ending in status epilepticus and death.
In many Southeast Asian countries, there is gender bias and females are discriminated. Because of culture bound beliefs women are not allowed to move out of their homes, even to seek treatment. It is the prerogative of the male member of the family to decide if her illness is worth a visit to a doctor or can be treated by a traditional healer or a local clergyman within the four walls of the house. Epilepsy is usually considered the work of the demons, due to some wrong doings of the female and she is de-possessed by gruesome methods of the local spiritual or traditional healer. Many equate epilepsy with insanity.25,30,33 In Zimbabwe, teachers too associate epilepsy with a type of insanity.35
For persons with epilepsy, there is no legal restriction on education. Most of the problems are related to the societal attitude. Educational opportunities are usually denied to persons with epilepsy42 and are not allowed to attend school.38 Even, teachers who are aware of the nature of the medical condition, insist on complete control of seizures before allowing the child to school. This is probably due to the pressure from parents of other children.45 In China a sizeable number of parents would not like their children having any association with persons with epilepsy in school or at play.33 Similar attitude is also observed in Denmark, a developed country.29 In Senegal epilepsy is considered contagious, forcing children with epilepsy to stay away from school.23 It appears that there is a change in this trend with time. Well-educated people in high positions are less prejudiced against their children studying and having friendship with children with epilepsy.25 However, many teachers have misconceptions about epilepsy. In Zimbabwe many school teachers, associate epilepsy with a type of insanity.35 Some teachers in Thailand prefer to place all the children with epilepsy in a special classroom22 while in Cantabria,21 25% of professors felt schooling of people with epilepsy should be done in special schools. In Sudan, more than a quarter of primary school teachers showed rejection towards children with epi-lepsy.46 Poor scholastic achievements of many patients with epilepsy may be due to the sentiment of shame expressed by parents, parental over-protection, or parental fear of the child's infectivity to others.18,43 In rural Tanzania,43 68% of parents would not allow to send the child with epilepsy to school, while 40% of parents in India25 felt that children with epilepsy should not be sent to school. In Pakistan there is a marginal association between epilepsy and educational possibilities; 27% of patients with primary education felt they were being avoided by their classmates.47 On the other hand in developed countries like Japan the general attitude of education towards younger people is seemingly generous.48
In many parts of the developing world epilepsy is still equated to temporary insanity,25 a perception fast changing.30 In persons with epilepsy, marriage may not have a legal sanction. In India till the end of 1999, epilepsy was a valid ground for seeking divorce49 and it probably still exists in Brazil.50 Many parents have objections to having their children married to persons with epilepsy.25,27,33,34,45 In a study in Brazil, senior medical students having excellent level of familiarity and knowledge about epilepsy expressed objection to marry their children to person with epi-lepsy.51 In the Indo-Pak subcontinent, marriages are normally arranged. Matrimony is still eagerly sought by females; educated or otherwise, working or not. Revelation of illness would spoil prospects of getting married and also profoundly affect social status of women with epilepsy. Concealment of the disorder is common among parents of a young girl of marriageable age in order to get an ideal partner. There is also a popular misconception that marriage cures epilepsy. The actual suffering of parents with daughters having epilepsy starts when her condition gets revealed after marriage. There have been instances when the in-laws, potentiate the physical agony of seizures and overall psychological stress by physically abusing the daughter-in-law. Many women with epilepsy are neglected after marriage and a sizable number are divorced.52 In Pakistan despite the belief that people with epilepsy should not marry, 20.3% of persons with epilepsy are married.47 In China while education has shown to reduce prejudice against play and employment, the objection to marriage still persists.33 The marital status of both the sexes has been found to be far from satisfactory even in a developed country like Japan.48
Epileptic seizures are accountable for a small proportion of road traffic accidents. Driving laws for persons with epilepsy vary in different countries, from a life-term ban to no regulations at all. In the United Arab Emirates and Sri Lanka there are no laws restricting a person with epilepsy from driving.53,54 In most countries, patients with good seizure control for at least one year and also with good drug compliance are allowed to drive a private vehicle, but professional driving is de-nied.55 The ban on driving is life long in Pakistan as in some other Asian countries. In these regions professional drivers especially flout laws, as it may cost their job. It is quite possible that a number of fatal road accidents are related to epileptic seizures while driving. In India, law pertaining to driving and epilepsy has been at absolute extremes during the last century. The Motor Vehicle Act of 1939 prohibits a person with even a single seizure from driving at any time,56 while the revised Motor Vehicle Act of 1988 has completely done away with the term epilepsy permitting patients with epilepsy to drive irrespective of the status of seizure control.57 In Japan, Taiwan, Singapore there is an absolute prohibition on driving.58-60 In Australia, a person with chronic active epilepsy must be seizure free for at least 2 years before getting a driving license, but a recently diagnosed person with epilepsy who is under treatment of a physician, needs to be seizure free for only 3 months.61 In very few countries there are statutary laws requiring the doctors to notify a person with epilepsy or his fitness to drive to the concerned authorities. In Canada, while it is mandatory in five provinces, it is discretionary in the other provinces. In the provinces with mandatory laws, seizure reporting was more than 80% and it was less than 20% in provinces with discretionary laws.62
In most of the developing world the concept of having a health insurance is alien or nascent. There is often no national health insurance cover. Many insurance companies do not provide cover for epilepsy. In India, until recently medical insurance was under complete state control. Medical insurance with the state owned companies, specifically excludes epilepsy.63 In Pakistan, the situation is similar. Persons with epilepsy are denied health insurance by the private as well as state owned insurance companies; many considering epilepsy as a congenital disorder.
There is no legal bar on employment of persons with epilepsy, however discrimination towards their employment is highly prevalent. World-over persons with epilepsy are sub-optimally employed. This is more so in developing countries. Employers are found to be unaware of employment problems faced by people with epilepsy.64 The seizure status is a major factor determining employment opportunities of a patient with intractable epilepsy. Persons with good seizure control and with no other handicap usually face lesser employment problem.65,66 Intellectual impairment, physical disabilities, psychological and psychiatric disorders further influence the employment status. Perception of the illness by the employer and coworkers is of great significance in all parts of the world, more so in the developing world. Various misconceptions associated with epilepsy deny patients with epilepsy employment or are under-employed with restricted career development.66 Persons with epilepsy have to battle against the wrong, but a common notion, that they are intellectually not up to the mark. They have to struggle against stigma and misconceptions to prove their capabilities and avoid getting socially and economically marginalized. Disappointment, deprivation, feeling of unworthiness and paranoia often creep in, resulting in psychological and/or psychiatric problems interfering with the quality of life. In United Arab Emirates, 10% of study population believe, that persons with epilepsy should not be employed in jobs like others45 and in China it is ~50%.33,34 In Finland ~1% of people studied would prefer to leave their jobs if they had to work with a person with epilepsy,28 while in Denmark 7% have objection to equal em-ployment.29 In Italy 70% of study population believed that epileptic persons should be employed in jobs like any other people.67 In USA there has been an increasing trend towards employment of persons with epilepsy.30
The general public has callously treated persons with epilepsy over the centuries and worst would be if law should sanctify these attitudes due to ignorance, prejudice and lack of communication between the concerned authorities. Epilepsy and law have never found it easy to understand each other. In Spain, the Supreme Court defined epilepsy as a typical endogenous psychosis, equating it with insanity. This can prove to be a double-edged sword; on one hand it can be the grounds for acquittal from criminal responsibility and immunity from prosecution for many offenders, while on the other the concept of insanity leads to the patient suffering social rejectment.68 Contrary to the popular belief, epilepsy is not equated with insanity in Indian law; past or present.69 The reference to 'epileptic insanity' has been made in one of the judicial pronouncements of the Supreme Court while discussing the relationship between epilepsy and premeditated murder with special reference to a plea by the defense for an epileptic automatism.
Drug noncompliance is highly prevalent in persons with epilepsy in the developing world. The reasons are multiple. Poor health infrastructure, scarcity of trained medical personnel, poor doctor-patient rapport, poor socio-economic status, high costs, nonavailability or inconsistent supply of anti-epileptic drugs, lack of treatment seeking behavior, traditional concepts and seeking of alternative treatment methods are some of the many reasons. All can result in poor seizure control and consequent impact on the quality of life.
Traditional beliefs have an important influence on the treatment seeking behavior of persons with epilepsy. There are people who hold both medical and traditional beliefs and seek both types of treatment.46,70,71 Multiple agencies are usually consulted including spiritual/faith healers and traditional local nonmedical practi-tioners.72,73 In many of the developing countries, the first contact of treatment is usually with an indigenous healer and alternative medicine.39 A supernatural belief combined with family decision is associated with this choice. Relatives, friends and neighbors have a marked influence on the treatment-seeking behavior. In Nigeria,73 86% of the patients are influenced to use alternative medicine, while in Turkey 65% have visited religious figures at onset or during the course of the disease.74 Alternative treatment includes traditional healers, herbal medicine, spiritual healing, faith healing, cautery, aryuveda and homeopathy.27,41,43,45,73 In India, in spite of being well informed of this disorder, alternative treatment methods are often sought.70 The proportion of patients treated by traditional healers and herbal remedies was 70% in Mauritania44 and 11.5% in Pakistan.3 Mystical beliefs about this disorder make many patients and families to visit a community spiritual healer, a holy person or a shrine while receiving allopathic medical care.74 Involvement of multiple agencies usually results in contradictory advice, confusing the patient with resultant poor seizure control. Alternative medicine especially spiritual healing should not be considered irrelevant in the management of epilepsy in the Indo-Pak subcontinent and the African regions where strong religious/mystical/spiritual beliefs prevail. Medically trained personnel dealing with epilepsy must work in tandem with these spiritual/ local healers.73,75 Skilful practitioners will not contradict the patient's belief, however, stress on the importance of anti-epileptic drug therapy along with a diplomatic but firm stand against negative traditional advice like placing the arm of a seizing child into fire and putting of pepper in the conjunctival sacs.
Treatment and management of epilepsy cannot be solely the domain of a neurologist, especially in developing countries where there is a gross deficit in manpower in the overall health sector. The concept that only the specialist must treat epilepsy patients has no practical use in the developing world presently or even in the near future. Although the number of neurologists in the developing world is increasing, there is still a significant deficiency in the desired number of experts who can take care of patients with neurological disorders, especially epilepsy. In 1975, there were two neurologists in Syria for a population of 8,000,000; after two decades there were 30 neurologists for a population of nearly 13,000,000. In 1977, Nigeria had a population equivalent to a quarter of all of Africa's population but had only seven neurologists. In Ghana, with a population of 8,000,000, there were only two neurologists.75 A recent epilepsy care status survey in developing countries conducted by International League Against Epilepsy (ILAE)76 reveals that there are five neurologists for the 11 million inhabitants of Cambodia and six for the three million population of Congo. In the Asia Pacific region, Papua New Guinea has no trained neurologist while Nepal has ~1 per 22 million and Pakistan ~1 per 6.6 million inhabitants.
Lack of informed knowledge regarding the goal of treatment and consequences of sudden stoppage is one of the many reasons of treatment failure.70 Inability of the treating physician to stress the importance of continuous long-term treatment, in the prescribed dose is a major factor. Patient load and stiff professional competition are the major reasons for the physician sparing very little time to the patient. Sub-optimal drug dosage, intermittent use of medicines, sudden stopping of drugs or change to other modes of treatment are major reasons for poor seizure control. Recurrent seizures interfere with the quality of life of the patient.
Governments in developing countries allot meager resources to health budget. Patients are either provided no free antiepileptic drugs or intermittently.76 Often patient has to pay for the treatment out of his pocket, which may be high with respect to his earnings. In Western India, the cost of AED includes a 40% of government-levied tax.50 This may result in poor drug compliance, poor seizure control and poor quality of life.
Epilepsy has been known for many centuries. Remarkable advancement on different aspects of this disorder has helped in reducing the associated physical agony to a considerable degree. However, scientific advancements have not yet succeeded in penetrating and eradicating the deep-rooted myths, misconceptions, superstitions and stigma which go hand in hand with epilepsy resulting in enhanced physical, psychological and social scarring, thus multiplying the sufferings of the patient. Bringing 'epilepsy out of the shadows' should be the goal of all concerned health care personnel in the new millennium. This is only possible by public awareness...health education to the masses.
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