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Epilepsy in the South Asian Community



  Compiled by: Puja Sahni



 
 
Introduction:

Currently, in Canada, there are approximately 600 000 South Asians and roughly sixty percent of this population resides in Ontario.  More than half of this 600 000 are immigrants, the largest number of whom moved to Canada between 1991 and 1996. This being said, it is only understandable that many South Asians in Ontario would have a strong hold on their traditional East Indian beliefs.  The Indian Epileptic Association (IEA) is quite active in India, with 22 chapters nationwide, each issuing its own booklets and newsletters on epilepsy.  Unfortunately, only a small portion of the country's population is reached by their efforts.  Traditional therapies, views, and superstitions relating to epilepsy are still believed by many South Asians and these beliefs are being introduced to Canada by each newcomer that arrives. Western doctors, neurologists and counsellors need to familiarize themselves with the traditional beliefs that South Asians hold, in order to provide them with optimal levels of care.  Increased sensitivity and understanding towards the culture will help to destroy any cultural barriers that prevent proper treatment.

Although much of the information collected for this paper is centralized around India, the term 'South Asian' refers to people of those countries which used to constitute Old India.  These countries include India, Pakistan, Bangladesh, Nepal, Sri Lanka and the smaller states in the Himalayas.  Since the ancestors of each of these countries were once part of a united nation, similar traditions and beliefs have developed despite the geographical borders.

Epilepsy in the South Asian community will be explored through the following:
    • Political and Socio-cultural Issues with Epilepsy
    • Epilepsy Awareness in India
    • Causes of Epilepsy and Hot Water Epilepsy
    • The History of Indian Medicine (Ayurveda)
    • Ayurveda and Epilepsy
    • Ayurveda and Epilepsy Treatment
    • Yoga as a Treatment
    • Ayurveda Today
    • India and Past Care for Epilepsy
    • India and Present Care for Epilepsy
    • A Health Care Guide to South Asian Religions




Political & Socio-cultural Issues with Epilepsy:
(Acknowledgement is given to Zaka Imam, author of "Indian Doctors Protest Against Anti-Epileptic Laws", from which much of the following information was compiled).

Of the one billion people who live in India, approximately ten million (10 000 000) have epilepsy.  The seventeenth of November has been declared National Epilepsy Day, which the Indian Epileptic Association (IEA) takes responsibility for organizing.  An essay competition, also directed by the IEA, revealed that children feel that the traditional attitudes towards epilepsy are slowly changing, which is a big step, since the disorder carries quite a stigma with it.

Similar to many other cultures, epilepsy in India is often confused with insanity.  People with epilepsy are not only discriminated against by society alone, but by the Indian government as well.  It was not until recently that the government made changes to their laws regarding people with epilepsy.  Previously, epilepsy was legally considered to be grounds for divorce by the Hindu Marriage Act of 1955 and the Special Marriage Act of 1954, if either the man or woman had recurrent seizures prior to marriage. The divorce was allowed by the Indian Insane Act of 1976 because it defined epilepsy as insanity, or as leading to insanity.  The IEA put in great efforts to dispel such prejudices and false beliefs nationwide and, in December of 1999, epilepsy was no longer considered as grounds for divorce.

Other discrimination against people with epilepsy exists in respect to driving and medical insurance.  In Ontario, if a person with epilepsy has been seizure-free for a year and has a letter of referral from their neurologist, they are eligible to drive.  However, in India and Pakistan, a patient with epilepsy has their driving privileges removed for his/her lifetime, despite guidelines developed by the IEA, which state that a person with epilepsy may drive provided they have been seizure-free for three years.  With respect to medical insurance, India's Medical Insurance Act did not include epilepsy in its range of services until 1983, after the IEA took action to fight such discriminatory policies.  Yet, epilepsy is still excluded from Mediclaim, one of the government's more recently established health insurance systems.

Interestingly enough, most of the social stigma associated with this disorder lies with the urban rich, and not the rural poor.  The rural poor do not consider epilepsy to be such a great problem.  Families care for those who are ill; patients with epilepsy are not disowned or abandoned by families, and they go on to marry, which secures their acceptance in society.  Although this decreased stigma may socially benefit the patient, it can also lead to other problems, especially when it comes to treatment.  For example, the rural poor are limited in their education and, therefore, have a stronger hold on Indian traditions.  As a result, they are hesitant in resorting to long-term and consistent medical therapy, especially if recurrent seizures are witnessed while taking medication.
 
Since a greater stigma is associated with the urban elite class of India, many people are hesitant in informing others of their disorder.  Their families, too, avoid sharing such information as they fear social rejection.  Since arranged marriages are rather popular in India, many fear that, if others were to know about their son or daughter's epilepsy, wedding proposals would be a challenge to come by.  People are hesitant to marry someone with a health problem because, along with the stigma, they fear that their child may also grow to inherit the condition.  Although many of the urban elite are educated, they have a strong hold on misconceptions and superstitions that prevent epilepsy from becoming a socially acceptable disorder.
 
 
 
Epilepsy Awareness in India:

In the past, and perhaps even now, patients with seizure disorders believed that their seizures were a form of punishment for sins committed in past lives.  This idea allowed these people to accept their condition.  Such attitudes persisted because of deficiencies in education of not only the people living in the villages, but of the local health care providers as well.

A Knowledge Attitude Practice (KAP) survey was conducted as a part of a study done in Yelundur, located 150 km away from Bangalore, India.  The Rural Epilepsy Control Program, Yelundur Study was completed in June of 1997 by the IEA, along with a non-governmental organization (NGO) called Karuna Trust.  The KAP surveyed 372 participants and found the following:
    • 76% of people surveyed knew of epilepsy, while only 9% of which could relate it to the brain
    • 72% surveyed felt that Western drugs could cure epilepsy
    • 66% had tried anti-seizure drugs, but not on a long-term basis, and without any benefits
    • 20% of people reported experiencing the stigma by family or social rejection, or both

Although efforts are continuously being made by various organizations, researchers, specialists, physicians and volunteers, a large portion of the country's population is unaware of epilepsy.  Approximately 80% of epilepsy patients remain untreated due to multiple factors, including lack of education, lack of medical personnel, and/or inability to afford the long-term and costly medication.  In addition, there are still misconceptions about epilepsy, such that it leads to insanity or that it is related to insanity.  Such misconceptions can possibly be seen in South Asians who have just moved to Canada.  As a response, our medical personnel should be aware of this, so that cultural and communication barriers do not prevent adequate health care.
 
 
 
Causes of Epilepsy and Hot Water Epilepsy:
(Acknowledgement is given to Asha Krishnakumar, author of "Dealing with Epilepsy," an article published in Frontline Magazine in 2000).

Generally, head injury, brain infections, encephalitis, meningitis, abscess, and dementia are the most common causes of epilepsy.  In many developing countries, the causes of epilepsy are common knowledge, and are centralized around poor sanitation and poor pre- and post-natal care.  In addition, people who have a genetic susceptibility to epilepsy are at a higher risk when the above mentioned factors are in play.  Epilepsy as a result of malarial and tubercular infections is a rather common cause.   Specifically, in India, consumption of food infested with tapeworm eggs is a major cause of epilepsy.  The larvae of these eggs enter the blood stream once hatched.

Specific to South India is hot water epilepsy.  It is a reflex seizure disorder thought to be brought on by a bathing exercise that involves pouring hot water (as hot as 40 or 50 degrees Celsius) on top of one's head, using a mug.  The increase in water temperature creates a thermal sensory stimulus over the head which results in the reflex seizures.  It is thought to have an effect on those who have trouble regulating their body temperature. Children in India who experience this phenomenon are usually around the age of thirteen.  Cases of hot water epilepsy have also been reported in Turkey, Japan and Europe.  In Europe, however, the age of children ranged from six months to two years, and only in India is such hot water used.

Dr.  P.  Satishchandra, Professor of Neurology at the National Institute of Mental Health and Neurosciences in Bangalore,  has done experimental work to further analyze this phenomenon. Currently, Dr. Satishchandra and Gautam Ullal of Ramaiah Medical College are conducting a study on the genetics of hot water epilepsy.  Since cases in southern India are more common than in any other part of the world, genetics is a concern.  A Reuters Health article written in New York stated that "between 7% and 18% of South Indians suffering from hot water seizures have a family history of the attacks."

Many of the causes mentioned above are preventable, and efforts are being made to further educate the rural poor about these issues.
 
 
 
The History of Indian Medicine (Ayurveda):

The Indian system of medicine is known as Ayurveda, which means the science of life.  Ayurveda works to correct any imbalances in the body that may result in illness or poor health.  Ayurveda is the oldest complete medical system in the world, having originated thousands of years ago.  It is still in use today and has influenced several other cultures.  Currently, Ayurveda is being integrated with Western medicine for the treatment of many diseases and disorders, such as epilepsy.

The Vedas are a collection of ancient Indian textbooks with spiritual writings on topics such as health, astrology, spiritual business, government, war, poetry, spiritual living and spiritual behaviour.  There are four Vedas: Rik (Rig), Sama, Yajur and Athava.  The Rik Veda is a text containing verses on the nature of health and disease, pathogenesis, and principles of treatment.  The Rik Veda discusses the three doshas and describes the use of herbal remedies as a healing process for the mind, body, senses and the soul - the four essential parts of life.  The mind and body are thought to work together to regulate a person's physiology.  The senses are the "information gatherers" that allow the mind to properly assist the body.  As for the soul, it is seen as an underlying and rather subtle energetic essence that is separate from our physical entity.  One's soul is thought to remain with a person throughout time, despite the different physical bodies one may occupy through rebirth or reincarnation - another strong belief of many South Asians, particularly those following the Hindu or Sikh faith.  Two other writings still used today for ayurvedic purposes are the Charaka Samhita and the Sushruta Samhita.  The first concentrates on internal medicine and the second on surgical aspects.

The principles of ayurvedic medicine state that there are five primary elements to each and every individual.  These elements include ether (space), air, fire, water, and earth.  Combinations of these elements are responsible for directing different forces within the body that are related to movement, metabolism or growth.  These combinations are referred to as doshas, of which there are three: Vata dosha, Pitta dosha, and Kapha dosha.  When one of the doshas has become excessive (i.e. if there is a problem with movement, then the Vata dosha is in excess), ayurveda will assign a specific diet and lifestyle in order  to return the body's natural elements back to a balanced (and healthy) state.
 
 
"the medicine is the art of entertaining the disease while mother nature plays its role"
- ancient Hindu proverb



Ayurveda and Epilepsy:
(Acknowledgement is given to Epilepsy Toronto's winter 1999 article titled, "Epilepsy in Different Cultures" written by Lisa Francesca, Mphill, MD).

Ayurveda refers to epilepsy as Apasmara, which means "loss of consciousness."  Ayurvedic medicine recognizes four types of epilepsy and nine disorders that cause convulsions in children.  Each of the four types of epilepsy described has its own individual symptoms.  In addition, each type of epilepsy, according to the ayurvedic medicine of Charaka Samhita, is associated with the name of a spirit or god - usually evil.

Epilepsy is believed to be the result of a number of different things.  The believed causes include:
    • when one's mind is overshadowed by energies, such as the rajas (energy of movement) and tamas (the objective world of the five senses), resulting in aggravated doshas and loss of equilibrium
    • when a proper diet has not been maintained (i.e. foods with contradictory properties are eaten        together)
    • when unclean food has been consumed (i.e. food that has been touched by lepers)
    • when unhealthy conducts have been exercised
    • when one is overworked, excessively tired or weak

When aggravated, the doshas, or humours, enter the heart, where the soul and sense organs are believed to be.  This invasion of the heart is believed to create an over stimulation of emotions, resulting in a seizure.
 
 
 
Ayurveda and Epilepsy Treatment:

Ayurvedic treatment is focussed on the individual rather than just on their condition, and on the individual's type of disturbed equilibrium.  The same type of disturbance can result in different disorders, whereas the same disorder can result from different forms of disturbances/imbalances.

Ayurvedic medicine seeks to treat epilepsy by unblocking the channels of the heart and the mind that may be clogged by the excess doshas or humours.  This opening of the channels is practised using various injections and purgatives.  Oral drugs are cooked with oils and ghees (purified butter) and external oils, massages, and baths are suggested for treatment.  Selected medications are also supplied to the body through the eyes and nose.  Cauterization is also practised.  This is a method by which the parietal bone tissue is broken with a hot iron, an electric current, or a burning or corrosive substance, in order to release blood from the body.

Listed below are several ayurvedic treatments that have been used in the past to treat epilepsy and others that are still being used today.  However, as mentioned before, the treatment selected for one patient with epilepsy may not be appropriate for another.  It is also important to note that most, if not all, of the traditional medicines listed below have not been scientifically or clinically proven to cure or help people living with epilepsy and are most often recommended based on the strength of one's belief in alternative treatments.
One type of ayurvedic herbal remedy believed to be effective for epilepsy is called siddharthaka ghrita.  It is also used to treat intoxication, asthma, and insanity. Another herbal preparation, recommended by the Ayurveda Asramam Hospital in India is Aswagandharistam.  Along with epilepsy, this remedy is believed to treat dullness, loss of memory, sluggishness and insanity.  It is thought to increase one's energy, vitality and strength, and to provide physical nourishment.  The recommended dose is 15 ml to 25 ml.

One example of a specific treatment is rice boiled in milk, and then fed to a pig, whose dried stomach contents are then mixed with wine and fed to the patient.  Other remedies include valerian, cinnamon, lotus flower, fever tree, achyranthes root, and rotan sweet flag served in a juice of cow dung.  Perhaps such unappealing treatments are not as popular as they may have once been; however, it is important to be aware of the possible ingredients a patient may have consumed in order to understand the depth of their reliance in ayurveda.

Saraswata Rishta is another herbal medicine that ayurveda has assigned to epilepsy treatment.  It contains twenty-one different ingredients, some of which can be found in Cerebrex capsules, a commercially available drug from the European Institute for Scientific Research on Ayurveda.
Pandit Shiv Sharma, Asian Director of the World Federation of Life Sciences and professor of Ayurveda in Bombay, India, recommends a mixture of three preparations for the treatment of epilepsy.  The first is called Smriti-sagara Rasa. It is a metallic mixture containing mercury, arsenous sulphide and red arsenic.  The second is three herbal preparations called Jatamansi, Jyotishimati, and Saraswati Churna. The last preparation consists of specially treated Cinnabar (red oxide of mercury).  Pandit Sharma's recommendations are based on his saying that these treatments "can be very effective," and are not provided with any additional assurance, which is why these treatments, as well as all others mentioned here, should be applied with caution.

Skullcap Rasayana #16 is another ayurvedic herbal preparation for epilepsy treatment.  It is made from Skullcap, or Scutellaria spp. and 18 additional rejuvenating, healing, and carminative ayurvedic ingredients in a base of honey and herbal ghee.  Skullcap is thought to reduce excitability, anger, jealousy, hatred and excessive desires.  Along with treating convulsions, this Indian medicine is used for insomnia, tremors, muscle spasms, neuralgia, neurosis, nervous headaches, hypertension, arthritis, drug addiction, withdrawal and meditation. This remedy has not been clinically proven to cure or help control seizures in patients with epilepsy and, like all other traditional medications, is recommended to be taken based on one's faith in alternative treatments.

Since the types of epilepsies classified by ayurveda are based on spirits and gods, many healing practices are spiritual in nature.  Prayer and meditation play a large role in the South Asian community.  Many South Asians, whether they take medications or not, will visit a holy temple or holy person in search of a cure.  As for meditation, yoga is ancient to India, having originated approximately 4000 years ago.  It is used widely around the world and has even been introduced to the Western society  as a healthy way to reduce stress, increase flexibility, and improve strength and overall fitness.
 
 
 
Yoga as a Treatment:

The yoga system most recognizable to Westerners is called Hatha Yoga and  consists of physical postures, movements, and breathing exercises.  Although yoga does not cure epilepsy, it certainly does help to relax the mind and relieve stress, a factor that is believed to trigger seizures.  A small study published in 1996 in The Indian Journal of Medical Research explored the effects of Sahaja Yoga on seizure control.  Although the study was not large enough to be considered conclusive, its results were intriguing to researchers.  The study found an 86% decrease in seizure frequency in patients with epilepsy who practised Sahaja Yoga for six months.  Additional research completed at the All India Institute of Medical Sciences (AIIMS) in New Delhi concluded that meditation also led to reduced seizures, as it improved the brain wave activity in people with epilepsy.  A similar American study found that those who learned to control their breathing experienced fewer seizures.  Currently, at the New York University Comprehensive Epilepsy Center, a similar study is being conducted by Dr. Steven Pacia to rectify previous findings.

Most Westerners perceive yoga to be a form of exercise and wish to benefit mainly from the physical benefits and stress relief it offers.  In ayurvedic terms, yoga focuses on eliminating the imbalance in the body that is negatively affecting the patient's health.  Since epilepsy is considered to be a physical disorder caused by imbalances in the body's physical and physiological systems, yoga is recommended by many ayurvedic specialists and doctors such as Dr. Nandan Yardi, Epileptologist, Yardi Epilepsy Clinic, Kothrud, Pune, India.

Asanas or Postures

      Asanas or "yogasanas" are helpful in restoring balance to the body's metabolic systems.  Practising asanas works to increase physical stamina and calm the nervous system.  It is believed that asanas help to improve circulation, respiration and concentration, and may even decrease the chances of experiencing a seizure.

Dhyana or Meditation

      Meditation is thought to soothe the mind while it works to heal the body. Meditation is also thought to improve blood flow to the brain, to control the production of stress hormones, and to increase the production of serotonin, a neurotransmitter in the brain that helps to keep the nervous system calm.

Pranayama or Deep Diaphragmatic Breathing

      If possible, this type of breathing is recommended for those people who are able to identify when they are about to experience a seizure.  Although rarely encountered, people with this ability are encouraged to practice pranayama to restore normal respiration, which is believed to reduce the chances of falling into a seizure state.

 
 
Ayurveda Today:

Today, ayurveda is not only being integrated with Western medicine, but is also being incorporated into university medical training in India.  There are hundreds of Ayurvedic Institutions in India and worldwide.  Many of today's modern Western medicine is based on European practices which incorporated many aspects of ayurvedic medicine into their writings. Although Indian medicine is still practised in India, it is important to note that India does not fall behind in providing Western medicine in its treatment for those living with epilepsy.  Many anti-epileptic drugs (AEDs) are available in India and are prescribed readily by physicians and neurologists.
 
 
 
India and Past Care for Epilepsy:
(Acknowledgement is given to K.S. Mani and Geeta Rangan authors of "India", chapter 276 of  Epilepsy: A Comprehensive Textbook, from which much of the following information was compiled).

Neurology was only developed as a specialty in India in 1951.  Throughout the 1940s and the 1950s, phenobarbital and phenytoin were the only AEDs available in India, and treatment often mixed the two together.  In India, people with seizure disorders, who have recurrences despite taking medication, tend to search elsewhere for a cure to their condition.  Even those whose seizures were controlled with the medications would not continue taking medications after the first thirty tablets or so.  Stopping drug therapy resulted in treatment failure and it led people to resort to alternative treatments such as ayurveda.  In some rural areas, it was more difficult to obtain proper health care, so alternatives, such as ayurveda, branding, fasting, amulets, and prayer were widely used as therapeutic methods.  Today, as well, rural areas that still experience inadequate health care tend to turn to these alternatives.  However, the health care system is slowly expanding its resources to attend to those people living in villages away from the city hospitals and clinics.
 
 
 
India and Present Care for Epilepsy:
(Acknowledgement is given to K.S. Mani and Geeta Rangan authors of "India", chapter 276 of  Epilepsy: A Comprehensive Textbook, from which much of the following information was compiled).

India's health care system is run by both the government and by private practitioners or voluntary agencies.  Only 10% of medical workers are employed by the government and the rest work for private organizations.  Ironically, 70% of India's population resides in the rural areas of the country, while 70% of health professionals are located in urban areas.  Although many specialists, such as pediatricians, have now set their practices in urban areas that are easily accessed by people from surrounding villages, neurologists, neurosurgeons, and psychiatrists are still concentrated in the cities, making it difficult for villagers with epilepsy to receive specialized care.  Presently, there are many anti-seizure drugs available in India; however, they may only be affordable by the middle and upper classes, two groups that only constitute approximately a third of the nation's population.  The poor, the government, and the non-governmental organizations cannot afford all of these medications, making it extremely difficult for one to receive proper treatment.  In addition, there are only some 500 neurologists in the entire country who are expected to serve a population of one billion. Such a ratio has led Professor Gourie Davi and Dr.  Satishchandra, leaders of The National Epilepsy Control Programme, to train at least one medical personnel in each district about epilepsy and corresponding care.
 
 
 

A Health Care Guide to South Asian Religions:
(Acknowledgment is given to the Multicultural Association of Fort McMurray, whose website provided the following information).

In South Asian culture, Hinduism, Sikhism, and Islam (Muslims) are three very popular religions.  Below are some points to remember while attending to patients of the above mentioned faiths.  Certain beliefs and feelings exist that may seem unusual to the Western mind, yet they are beliefs and feelings we should respect, as with all religions.
 

Hinduism
    1. Traditionally, when a family member is ill, and medical information is to be reported to the family, a male member of the family, usually the father, is addressed.  However, it is important to note that the modern society of India may not expect such treatment, and those who are long-time residents in North America may feel insulted if the mother is not addressed as well.
     
    2. Women are generally more comfortable being attended to by female physicians, especially when a complete medical examination is to take place; however, care should not be discontinued if only male physicians are available; unless, of course,  it is the patient's request to see a doctor of the same sex.


Sikhism
    1. Although it is acceptable to be attended to by a physician of the opposite sex, the patient's modesty may result in a request for a practitioner of the same gender.  In addition, women may be more comfortable discussing health-related topics with another female, or having a female health practitioner present when with a male doctor.
     
    2. For unmarried women, mothers will want to be present at the medical examinations, as female chastity has an extremely high value in the Sikh religion.
     
    3. Not removing hair from the body or from the head is a part of the Sikh religion.  Both men and women traditionally carry long hair (although many Sikhs living in Canada have cut their hair) and permission will need to be granted by the patient if, for example, the head needs to be shaved for surgical purposes.
     
    4. A turban is worn by many Sikh men and, although rare, by some women as well.  The turban is a symbol of the patient's Sikh identity and consent must be given by the patient or by a family member prior to removing it from the patient's head.  Once removed, the turban should never be placed on the floor, or in an unclean area, as doing so is considered disrespectful.
     
    5. The Sikh religion practices spiritual health care, as do many faiths, and a patient in the hospital may request to listen to a tape or CD of sacred hymns and prayers.  It is not unusual to see a Sikh patient bring prayer books or beads.


Islam
    1. For most Muslims, shaking hands or hugging a member of the opposite sex is not done.  Making eye contact with someone of the other gender is also not done, out of respect.
     
    2. Muslims prefer a health professional of the same sex; if not available, then the most experienced physician may examine the patient (so long as a female nurse is present if the patient is a woman).
     
    3. The Muslim religion specifies a particular dress and, as a result, many patients may be observed wearing scarves and long sleeves showing minimal skin.  During an examination or surgery, it is respectful to only expose the necessary parts of the body, while leaving the remainder covered.
     
    4. If there is bad news to be reported regarding the patient, then it is advised to discuss it with the family before informing the patient.  When a family member is in the hospital, the father should be addressed about information related to the patient.  If unavailable, then the mother or son should be addressed.
     
    5. Although death in the Muslim religion is seen to be a road to Allah (Lord), Muslims are encouraged to resort to treatment when ill.  However, although they will generally comply with taking medication, some may wear a talisman (charm) or taveez around their neck.
     
    6. There are some beliefs and controversies in the Muslim religion questioning whether or not Prophet Muhammed had epilepsy.


Extended families are common amongst the South Asian community.  As a result, it is not unusual to encounter many visitors while a patient is in the hospital.
Many South Asians believe in astrology and have religious events that follow the lunar calendar.  The phases of the moon may also be significant to them.
 
 
 
 
Resources:




(Author's note: selected sources listed above, particularly certain Internet websites, may not be valid or accurate in their information. However, information was used for the purpose of this information booklet in order to include any and all possible misconceptions existing in the South Asian community with respect to epilepsy.)


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Last Modified: 07/17/2006 01:43:36 PM