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by Lisa Francesca Andermann, MPhil, MD
Editor's Note: Ours is a very diverse community, and epilepsy crosses all lines of race, culture and ethnicity. Each culture holds its own beliefs and attitudes towards epilepsy, and the social effects on the person with a seizure disorder can be devastating. Exploring the differing cultural perspectives held within our multicultural constituency is important if all people with epilepsy are going to receive the understanding and treatment they deserve. Below is an abridged version of Dr. Andermann's Epilepsy in Developing Countries: Transcultural Psychiatric Research Review 32 (1995) 351-84, with permission.
EPILEPSY IN DEVELOPING COUNTRIES: INTRODUCTION
The management of epilepsy in developing countries requires knowledge and understanding beyond the usual practices of western medicine. The population of developing countries, which makes up 4036 million out of an estimated world population of 5246 million, includes numerous variations in cultural, economic, political, and religious life, level of education and literacy, and rural and urban lifestyles.
1 This heterogeneity translates into an equally diverse range of beliefs about the causes and treatment of illness. Epilepsy stands out in this regard because of the very nature of its symptoms, which include recurrent convulsions accompanied by loss of consciousness, as well as automatisms, postictal confusion, hallucinations, and delusions. These behaviours have impressed people from earliest times onwards as mysterious and frightening, and required a distinctive explanation within their system of belief.
This paper focuses on explanatory models of epileptic seizures in different cultures throughout Africa, India, China, South America, and the Middle East. It examines the social impact of epilepsy on individuals, families, and communities.
The Biomedical Definition of Epilepsy
Epilepsy is a common neurological disorder that occurs in adults and children throughout the world. The World Health Organization has adopted a definition of epilepsy as "a chronic brain disorder of various etiologies due to excessive discharge of cerebral neurons." 2 Most epidemiological studies of epilepsy consider two or more afebrile seizures unrelated to acute metabolic disorders or to withdrawal from alcohol or drugs as the basic requirement for a clinical diagnosis.
The etiology [causes] of epilepsy involves many possible combinations of genetic and environmental factors. There are numerous types of seizures which are classified according to age of onset, duration, degree of loss of consciousness, pattern, and brain focus. Epileptic seizures can be divided into: generalized seizures, including tonic-clonic convulsions where the patient falls to the floor unconscious, formerly known as grand mal; absence or petit mal attacks lasting only a few seconds; and focal or partial seizures, which comprise motor seizures, sensory attacks, psychomotor seizures and other localization related attacks. 3
Traditional Explanations of Epilepsy
Theories about the causes and subsequent treatment of epilepsy fall into four major categories. The first three are concerned with epilepsy as a punishment for sin, epilepsy as bewitchment or possession, and epilepsy as a contagious disease. 4 More than one of these conceptualizations may be held simultaneously.
The fourth view is that of the biomedical tradition, first expounded upon by Hippocrates (400 B.C) in his work entitled On The Sacred Disease, where epilepsy is described as a disease of the brain, to be treated by a regimen of diet and drugs, rather than by magicians and wizards. 5 Because of the dual physical and psychic nature of epilepsy, it has long been considered a meeting ground for scientific and spiritualistic interpretations.
Ideas about spirit possession and contagion were common in the West until modern times. Thus, supernatural conceptions as an explanation for illness are not unique to cultures other than our own, for they have shaped much of western thought about health and illness. In a similar manner, western medicine does not hold a monopoly on rational theories for explanation of illness. For example, in his study of Gnau medicine, G. Lewis 6 found that many minor ailments did not require spiritual interpretations. However, epilepsy often falls into the magical category because of its mysterious symptoms and so has been the source of a wide range of supernatural theories.
Africa
Throughout the African continent there exists a wide variety of beliefs about the causes of epilepsy and its treatment. Among the Baganda of rural Uganda, epilepsy, or ensimbu, is one of four known diseases of the brain, which include violent madness, foolishness, dizziness (also known as "the brother of epilepsy"), and epilepsy itself, which in this case refers to grand mal seizures. 7 Ensimbu [epilepsy] is thought to be a strong Kiganda [indigenous] illness brought on by witchcraft, and thus not curable by western medicine, which the Baganda believe does have the power to cure non-Kiganda diseases.
There is some uncertainty about which type of spirit actually causes ensimbu, or whether witchcraft is always involved. Another co-existing belief is that a lizard growing in the head of the patient is disturbing the brain by running in circles and making the person dizzy, a feeling that is usually followed by a seizure. 8 The lizard may have been there since birth, but can also be the result of witchcraft. Treatment by Baganda traditional healers includes cupping to remove the lizard, followed by further medications.
The belief that epilepsy is a contagious disease underlies all others in Baganda medicine, with drastic social consequences for the patient. Even a person with relatively few seizures will have to eat and sleep alone, leave school, be forbidden to play with other children, and will likely not marry, except in a downwardly mobile arrangement. Once a diagnosis of ensimbu has been made, people accept that the patient will suffer from a "spoiling of the brain." The social isolation that ensues may make this a self-fulfilling prophecy.
Beliefs about the contagious nature of epilepsy may also put the person with epilepsy in great danger. [Cooking fires are common throughout Africa as well as many parts of the developing world], and burns and scars that result from falling into the fire may occur if those nearby flee in fear. Severe burns are such a common occurrence among epilepsy patients, that they have been suggested by Gelfand and others as sufficient evidence for making a diagnosis of epilepsy. 9 For the physician, the presence of burns distinguishes epileptic convulsions from hysterical seizures, while for the traditional healer, it may be a sign that the illness has progressed beyond a certain point and is no longer curable.
Among the Bamileke of Maham in Cameroon, epilepsy is thought to be the work of witches as well as a contagious disease. 10 The disease is known as nwaa, meaning "to throw a person on the ground," and people with epilepsy are also described as "those who die and are resurrected." Nwaa also refers to a saturation of foams in the stomach, which overflow and rise to the head, causing a seizure. Treatment begins with a visit to a traditional healer, accompanied by dietary restrictions to prevent the over-production of foam in the stomach. As in many other African countries, the presence of burns renders the disease incurable in the eyes of the healer.
Beliefs in the contagious nature of epilepsy have been especially well documented in Nigeria. 11 Even 40% of third year medical students interviewed were not completely convinced that epilepsy was not a contagious disease.
The Bini of Nigeria believe epilepsy to be a disease of the heart. When blocked with foam, the circulation through the heart will stop, causing a seizure, a physiological explanation similar to that seen in Cameroon involving foam in the stomach. Methods used in some parts of Nigeria to resuscitate a patient with epilepsy include thrusting their limbs into a fire, rubbing pepper into the eyes and face, and forcing an unconscious person to drink a mixture made from cow's urine, which can then lead to complications such as aspiration pneumonia.12
In Malawi, epilepsy is believed to be caused by an insect moving inside the stomach, a belief which may possibly be based on the epigastric [abdominal] aura accompanying certain seizure types. 13 Traditional healers are sought for their mixtures of roots which induce vomiting and thus purge the stomach.
In Swaziland, epilepsy (known as sifosekuwa or falling disease, or sitfululwane, which may refer to a lizard's movement) is seen as an illness caused primarily by sorcery. 14 It is believed possible to use evil medicine to send animal spirits (tilwane) to enter the body and cause convulsions. Traditional therapies are based on concepts of purification and protection and include enemas, inhaling medicinal fumes, vomiting, sneezing, and exorcism in order to remove the illness from the body.
Epilepsy in Ethiopia is known as the "spinning" or "rotatory" illness. Initial cures for epilepsy include visits to holy waters, faith healing priests, local spirit specialists who practice exorcism and sacrifices, charms, and local remedies. 15 Faith in these methods, along with attempts to hide the illness, result in the occurrence of seizures for an average of 5-6 years before the patient presents to a hospital for treatment. This can have negative effects for the future control of seizures as well as constituting an unnecessary disruption in the life of the patient.
Patients with epilepsy in Addis Ababa and Butajira were asked what would be important to teach others about epilepsy and gave the following responses: "Don't abandon people who fall in the street. Know how to care for them during an attack; epilepsy has nothing to do with spirit possession, it is not contagious; people should be told to accept people with epilepsy like any other disease; educate patients to take their medications regularly and also when they are travelling; avoid alcohol and going near fires; avoid stress and sunshine." 16
Jilek 17 proposes that the concept of epilepsy as a contagious disease actually originates from a "historical and transcultural equation of epilepsy with rabies" (p. 131), the latter involving convulsions and frothing at the mouth that could be mistaken for epilepsy. Beliefs in the contagion of epilepsy correspond closely to areas where rabies is endemic.
India
Epilepsy in India has long been treated by Ayurvedic medicine, a system of empirical medicine with an extensive Pharmacopoeia based on correcting imbalances of natural elements in the body that are causing symptoms of illness. 18 Four types of epilepsy are recognized and the different symptoms are described in detail. Epilepsy [known as apasmara and apasmrti] can occur in individuals whose minds are overshadowed by rajas and tamas, when the dosas or humours have become aggravated and equilibrium is lost; when dietary rules have not been followed and unclean food, or ingredients with contradictory properties are eaten together, or touched by unclean people such as lepers; when unhealthy regimens are practised, and when there is "excess of debility." 19 When aggravated, humours enter the heart, thought to be the location of the soul and the sense organs, and create an overstimulation of emotions, thus causing a seizure.
Treatment is focused on the opening of the heart channels and of the mind which are blocked by humours, using enemas and purgatives. 20 Purified butters (ghees) and oils cooked with drugs are taken orally. Externally, the body is also anointed with different medicated oils, and massages and baths are recommended. Some drugs are also applied through the eyes and the nose. Cauterization of the parietal bones with needles and venesection or blood letting (Siravedha) is also practiced.
The Parsi community of Bombay are followers of the Zoroastrian religion. In the Videvdat, it is written that people with epilepsy are forbidden from offering sacrifices honouring Zoroaster, thus stigmatizing people with epilepsy and preventing them from participating in the religious life of the community. 21 However, it is not known how regulations such as these affect the daily lives of epilepsy patients at the present time.
People with epilepsy in India face difficulties imposed by the legal system even under the best conditions. Epilepsy is equated by law with insanity and the incapacity to care for oneself. 22 A 1976 amendment states that marriages can only be performed on the condition that neither partner has had recurrent attacks of insanity or epilepsy. If this is discovered later, then the marriage can be annulled. These regulations force many patients to hide their condition and may even prevent them from receiving treatment. This was confirmed in a study by Virmani and colleagues, 23 where only 5/68 patients informed their prospective spouses of their illness.
China
Epilepsy has been recognized in China since ancient times and convulsive seizures are described in the traditional Chinese medical texts. The illness was originally associated with "wind" but this was displaced by a theory involving mucus or phlegm blocking the cardiac system. Mental disorders such as psychosis (feng) and mania (ku'ang) were attributed to similar causes, thus creating an implicit link between epilepsy and insanity or emotional disorder. 24 Chinese traditional medicine does not describe nonconvulsive seizures such as absence, or partial seizures which do not involve a loss of consciousness.
Lai and colleagues 25 examined the awareness, understanding and attitudes towards epilepsy among rural and urban inhabitants of Henan province. A visit to a medical doctor was selected as the treatment of choice by 55% of respondents; 25% chose herbal medicine, while 14% preferred acupuncture. Dan Fang or Chinese folk medicine was mentioned by 15% of patients. The latter remedies include drinking a young girl's urine and eating fresh human brain or goat hearts, although evidence of these particularly dramatic practices was not described further. 26
In both rural and urban areas, there was an increasing tendency for people with epilepsy to consult traditional Chinese medicine. 27 While for initial attacks patients tended to consult a clinic or rural doctor, they would often choose traditional medicine in addition to biomedical methods for treatment of subsequent attacks. These treatments include Chinese herbal remedies, secret family herbal prescriptions and ge-zhi and mai-xian therapies, where incisions are made into the skin. Folk religious healers include Taoist priests, Buddhist adepts and Muslim imams.
A Henan study found many negative attitudes towards people with epilepsy among the general population: 87% would object to having their child marry someone with epilepsy, 57% would not let their child play with a person with epilepsy at school, and 53% believed that people with epilepsy should not do the same jobs as others. Living in a rural area with a lower level of education was associated with increased prejudice against family members either playing with or being employed with people who have epilepsy. However, the idea of a link between epilepsy and insanity was found to be more prevalent among the educated urban group. 28
While stigma, loss of face and low self-esteem are commonly encountered among patients in China as in the West, in China the moral "blame" associated with epilepsy extends beyond the individual to encompass his or her entire family. "The ruins of social relations ruin lives. Renqing, favour, the affect central to social exchange, can neither be given nor received. To lose face, to be unable to allocate renqing, to experience delegitimation means that the social course of epilepsy for patients and families is potentially a form of social death. It is not at all surprising, therefore, to what extent families will go to ward off, to resist, delegitimacy." 29
South America
In a remote Andean region of Ecuador, when people were asked about [epilepsy's causes], the most frequent response was that epilepsy was caused by pena y sufrimiento, an Andean cultural concept translated as "trouble and woe," as well as by brooding and thinking too much about problems. 30 Anger was also highly rated as a possible cause. In general, patients with epilepsy were described as sick, weak, sometimes crazy or mad (loco) people who cannot do the same work as others and will have difficulties with relationships and with the community.
The prevalence of epilepsy in rural Ecuador is 2-3%, which is 4-6 times greater than rates in developed countries. 31 About 50% of cases in this population are due to infection by Taenia solium (pork tapeworm), the larvae of which invade the brain and cause seizures. Preventive treatment with praziquantel on a community basis costs around 10 cents U.S. per person for deworming.
A study of help-seeking strategies in patients with epilepsy in Ecuador found that more women then men visit doctors rather than healers, and women seem to make more use of medical services in general. 32
Middle East
Only a few epidemiological studies of epilepsy in the Middle East have been published. The meaning of epilepsy in the context of Turkish culture has been explored in greater depth through the study of epilepsy narratives. 33,34,35 Epileptic seizures (sar'a) are described as fainting (bayilma) because this is a much less stigmatized category, which comprises numerous nonspecific reactions to traumatic experiences such as fright, shock and major losses which are often thought to trigger the development of seizures. 36 Childhood fever or injury is also known to cause seizures in some cases. Others believe in the role of spirits (jinn) in the development of their illness and described the treatment received from religious healers (hoca) and visits to shrines.
North America
The role of ethnicity in the utilization of biomedical health care is not only an issue in developing countries. The Native North American Tewa consider breach of tabu, or any digression from the ideal way of life, to be the primary explanation for disease, followed by object intrusion, contagious magic and witchcraft. Mothers of children with epilepsy often blame themselves for having had bad thoughts or actions during the pregnancy which could have caused the illness. Among the neighbouring Navajo population, grand mal seizures are thought to be the direct consequence of sibling incest, thus representing a stigma for the entire family. 37 While these beliefs are not found among the Tewa, patients and their families still experience varying degrees of social isolation.
An illuminating study of compliance with medical treatment among patients with epilepsy in New York City illustrates the wide range of beliefs about illness causation and treatment which exist even in the context of a large urban centre where all those in the study have been followed by a neurologist at some time. 38 Because pharmacological treatment of epilepsy is a long term process that at best will control seizures, but does not provide a cure; in cases where there are equivocal results, many people often consider alternative therapies. In their examination of seven case studies, Trostle and colleagues identified six different personal strategies of drug consumption, each related to patients' understanding of the illness and the effects of anticonvulsant medications on their seizure patterns.
In addition to neurological follow-up, these patients had sought treatment for their epilepsy through biofeedback, homeopathy, chiropractors, faith healers, allergists, and megavitamin therapists, often concurrently. This study acts as a reminder that the dual use of biomedical health services and non-mainstream, traditional or folk medicine is not only an issue for health care workers in the remote clinics of the developing world, but must be addressed in any contemporary health care setting.
While many complex problems remain to be solved regarding the care and treatment of people with epilepsy in developing countries, an awareness of the issues outlined in this paper, including social and economic conditions, traditional beliefs, and of the potential and limitations of biomedicine, are necessary in order to improve the quality of life for the many affected people around the world.
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38 TROSTLE, J,A., HAUSER, W.A. & SUSSER, I.S. (1983). The logic of noncompliance: Management of epilepsy from the patient's point of view. Culture, Medicine and Psychiatry, 7,35-56.
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