Epilepsy Ontario :: Epilepsy in the Latin Community

Epilepsy in the Latin Community

compiled by: Puja Sahni

Introduction:

The Latin community is comprised of people from many different countries, particularly those located in Central and South America. A 1996 Census, conducted by Statistics Canada, found that there are over 118 000 people of Latin, Central, or South American ethnic origin in Canada, 51 980 of whom reside in Ontario. Although Canada's Latin community is not as prominent as that of the United States, it is still one of significance, and it is important for health care personnel to develop sensitivity towards their traditions and beliefs.
People of the Latin community are also referred to as Hispanics, a term defined by the United States Census Bureau to be "persons who identify themselves as being of Spanish origin." Although this term is widely used, the term Latino is preferred by most.

Just as the cultural diversity throughout Canada is great, many Latin American countries also have diverse populations. For example, in Santa Catarina, Brazil, there are people of Portuguese, Italian, German, Native and African origins. Therefore, the information contained in this booklet relating to the Latin community is limited in its ability to be applied to each and every individual of Spanish or Latin descent. As a result, it is important to remember that each patient should be addressed individually. The generalizations made below are intended to create a greater understanding of traditional beliefs in order to prevent any cultural barriers from arising.

Epilepsy in the Latin community will be explored through the following:

Epilepsy in Latin America
Epilepsy in Brazil
Epilepsy in Ecuador
Epilepsy in Spain
Latin (Hispanic) Folk Beliefs
A Health Care Guide to the Latin (Hispanic) Community

Epilepsy in Latin America:
(Acknowledgement is given to P.R.M. Bittencourt, author of "Epilepsy in Latin America," a component of the text, A Textbook of Epilepsy, from where much of the following information was compiled. Note: this is a 1988 publication and some of the information, such as that relating to Latin American research, may be outdated).

The prevalence of epilepsy in Latin American countries is approximately 1%. Of the estimated five million (5 000 000) people living with epilepsy in Latin America and the Caribbean, 70% are not treated.

Epilepsy research in Latin America falls short compared to other countries. Very few epilepsy related studies have been conducted by Latin American researchers and most, if not all, publications were brought forth by the same research groups. In certain studies, there has been considerable inconsistency in the incidence and prevalence rates found for epilepsy in Latin America. These inconsistencies may be due to the fact that people living in certain areas have considered single seizures as epilepsy, and have even been prescribed anti-seizure medication. The general conclusion, however, is that the prevalence rate in South American countries is twice as high as that in North American countries.

Socio-cultural Issues:

The largest problem in Latin American countries that contributes to the stigma associated with epilepsy is lack of education. In addition, low cultural standards encourage the longevity of historic misconceptions relating to epilepsy, further magnifying the stigma. Studies have shown that not only is the general public unaware of epilepsy, but many physicians are as well. As in many other developing countries, although there are areas that fall short in their health care facilities, there are also those cities or regions in which medical care is comparable to that of major North American cities. In Southern and Central America, these regions include São Paulo, Mexico City and Buenos Aires.
Perhaps in response to the attached stigma, the term 'epilepsy' is rarely used for non-retarded patients experiencing seizures. Instead, the term 'cerebral dysrhythmia' (disturbance or irregularity in the rhythm of the brain waves as recorded by EEG, Webster's Medical Dictionary) is used.

A study carried out in Uruguay by Pasquet et al (1976a, 1984) compared employment statistics of those with and without epilepsy. The following results were obtained:

37% of people living with epilepsy were unemployed
6.7% of Uruguay, as a whole, was unemployed

It is evident from the study's findings that a higher rate of unemployment was associated with people with epilepsy, possibly because of the misconception that they are 'mentally ill'. Since then, a multi-disciplinary team worked to re-employ many of these people and was somewhat successful in its efforts.

Epilepsy Treatment in Latin America:

As mentioned earlier, in the past, and possibly even in the present, anti-seizure drugs have been issued to patients experiencing single seizures. The practice of considering one seizure to be epilepsy has led to the over-medication of many patients.

A limitation in the Latin American treatment system is that phenobarbitone is the single most commonly-used drug administered for seizure control. This reflects an oversimplified understanding of epilepsy as a static disorder independent of individual differences in symptoms, height, weight, reactions, etc. Phenobarbitone is not only cost efficient, but it is simple to use, results in minimal side effects, and results are seen early in the medication process. The cost efficiency of the drug probably has the most to do with its excessive usage since other drugs, such as carbamazepine and sodium valproate, are more expensive. The lack of appropriate anti-seizure drug therapy in Latin America is an additional contributor to the stigma affiliated with epilepsy.

Epilepsy in Brazil:
(Acknowledgment is given to Carlos A. M. Guerreiro, author of chapter 273 in Epilepsy: A Comprehensive Textbook, published in 1997).

There has been a great deal of epilepsy research done in Brazil. This research not only focuses on the incidences and causes of epilepsy, but also explores the attitudes, opinions, and traditional beliefs held by the people of this country with respect to epilepsy.

Socio-cultural Issues:

Brazil, alone, has over 1 570 000 people living with epilepsy, which is almost a third of the Latin American/Caribbean total. In Brazil, the disorder is the thirtieth most common reason for hospitalization. Those hospitalized, however, are usually those experiencing status epilepticus, frequent seizures, or complications with their condition.

Unfortunately, although the country rates tenth in economic strength, it rates as one of the worst countries in terms of basic education. It was found that 80% of students in Brazil do not even complete primary school. This is the highest school evasion rate known, according to Guerreiro. Such low levels of education throughout the country contribute to the stigma associated with epilepsy and prevent any possible social acceptance of those living with the disorder.

Along with stigma, there are many other factors that contribute to the poor quality of life experienced by people living with epilepsy. According to the Brazilian Association of Epilepsy (ABE), "Overprotection, under-stimulation, low self-esteem, isolation, depression and anxiety may constitute an extra burden and create barriers to an active life. Moreover, myths and prejudices...may lead to serious psychosocial problems for many patients." The ABE's efforts are aimed at educating the public, in order to lift the social rejection for those living with epilepsy. They hope to increase self-esteem, decrease prejudice, and establish epilepsy as a primary health priority in the eyes of government and health authorities.

The Brazilian Epilepsy League is another organization working to improve the lives of those living with epilepsy. They provide educational material in the form of videos, booklets, and books to members, medical schools, and physicians. The ABE is an arm of this organization. Although both organizations have made significant differences for Brazilians living with epilepsy, they are limited in the number of people they reach.

Causes of Epilepsy in Brazil:

neurocysticercosis is the most common parasitic disease in southeastern, southern, and central-western Brazil and, in many other developing countries, is a major cause of epilepsy
malaria, when it shows cerebral complications
perinatal brain damage, particularly common in regions with inadequate prenatal care
caniocerebral trauma, as a result of motor vehicle accidents (which have a high incidence in Brazil)

Basic strategies can be used to prevent epilepsy caused by the above. These include, prenatal care, safe childbirth, improved level of sanitation, control of infections (parasitic diseases), and reduction of brain injury due to trauma and stroke.

Epilepsy Treatment in Brazil:

The following anti-seizure medications were prescribed (as a percentage of the total number of medical prescriptions) in the region of Campinas, São Paulo:

33% carbamazepine
23% phenobarbital
13% phenytoin
9% valproate
0.2% lamotrigine
0.1% vigabatrin

Drug compliance has not been studied thoroughly enough to determine whether or not patients in Brazil are readily taking their medications. However, a small study found that, out of 78 diagnosed patients, 11 (~14%) did not adhere to taking their medication.

Surgery is another treatment available in Brazil, and has been a choice for patients in need for almost thirty years. People with severe cases of epilepsy usually reside in large psychiatric hospitals and in outpatient institutions for the mentally handicapped.

Alternative Medicine as a Treatment for Epilepsy in Santa Catarina, Southern Brazil:
(Note: the following information was compiled from a study done by Dr. Paulo Cesar Trevisol-Bittencourt, MD, MSc, Professor of Neurology at the Federal University of Santa Catarina, and his group of researchers.)

Santa Catarina is the smallest state in southern Brazil with approximately five million (5 000 000) residents of Portuguese, Italian, German, Native Indian, and African descent. The use of alternative therapies by each group, based on religion and culture, was analyzed. Treatments included blessings, home remedies, prayers, and spiritual surgery. Unfortunately, most physicians also have an unconventional way of thinking about epilepsy and therefore contribute to many of the erroneous beliefs associated with it.

In the study done by Cesar et al, 100 patients were surveyed, whose seizures were resistant to conventional medications. The survey was aimed at revealing the different alternative therapies selected by these patients, who recommended alternative medicine for them, and their opinions on the "alternative experience." A summary of the survey results is provided below:

61 out of the 100 surveyed were users of alternative medicine
56% of the 61 users were female
the majority of users (74%) had a high school education
the majority of users (84%) were of middle income
26 patients chose alternative medicine as the first treatment for seizure control
~80% of the users rated the alternative experience as "good", whereas ~15% rated it as "regular" and ~5% as very bad

Some of the alternative therapies used for epilepsy treatment included:

skunk oil
fried pig testicle
black chicken excrement tea

The following table displays the different alternative medicine practitioners and the number of patients who resorted to their services.

Type of Practitioner	Treatment Methods	Number of Patients who Visited the Practitioner
Spiritualist	spiritual surgery, energy transmissions, holy remedies	61
Catholic Priest	blessings, prayer, herb infusion, home remedies, exorcism	49 (2 for exorcism)
Medicine Man	herb infusion, special diet for epilepsy, blessing, prayer	47
Pentecostal Pastor	exorcism, holy remedies, blessing, prayer	44 (15 for exorcism)
"Candomblé" Medium	voodoo practice	9
Conventional Doctor	homeopathy, acupuncture	8 (7 for homeopathy and 1 for acupuncture)

The bible contains passages portraying the demon as the source of epileptic seizures. As a result, it is thought that, since the majority of the Brazilian population is exposed to the Christian religion during childhood, a significant number of epilepsy patients will seek alternative therapies, usually recommended by religious leaders.

Below is a table representing people of different cultures who were survey participants, and their utilization of alternative medicine:

Ethnicity	Total Number	Users	Non-Users
Portuguese	24	13	11
German	16	7	9
Italian	13	8	5
Afro-Brazilian	3	1	2
Spanish	1	1	0

The study did not find any substantial differences between racial/cultural and economic classification and relative use of alternative therapy.

The efficacy of these alternative treatments was not determined in this study, nor was it determined for the purpose of this booklet. However, a psychological factor may play a large role in treatment via alternative medicine. This can be said because, although many of the patients continued to have seizures, they mentioned a feeling of "well being" while receiving treatment. A similar feeling is sometimes felt by patients visiting a conventional doctor. Such feelings are often outcomes of positive relationships existing between both the care giver and the patient. A healthy relationship consisting of little to no cultural barriers and a relationship that does not discriminate against the patient's beliefs allows for better communication and better levels of care.

Aside from this study, additional documentation has led us to believe that a plant, called Tayuya, has been used throughout Brazil since prehistoric times. As a treatment for epilepsy, it is thought to have a calming action on the nervous system. In addition, it is also used to treat backaches, headaches, ulcers, reverse dyspepsia, irritable bowel syndrome, stomach tension, etc. It acts as a blood purifier and detoxifier and is also used to treat skin problems.

Epilepsy in Ecuador:

the prevalence rate in Ecuador is 2-3% for epilepsy
approximately 50% of epilepsy cases are caused by an infection by Taenia solium (pork tapeworm)
more women then men seek medical help
fewer women then men seek healers as opposed to conventional doctors
epilepsy is thought to be caused by pena y sufrimiento, meaning "trouble and woe," or having too many problems on your mind
the general population of Ecuador also considers anger to be a possible cause of epilepsy
people with epilepsy are thought to be sick, weak, or crazy
it is also believed that those living with epilepsy will experience problems with relationships and with the community in general

Epilepsy in Spain:

Currently, in Spain, epilepsy is thought of as a psychological disorder rather than a neurological one. People with epilepsy are "still considered to be potentially dangerous persons" because of their supposed violent nature, etc. (Rev Neurol 2002 Mar 16;34(6): 555-62) It has not been determined, for the purposes of this booklet, whether or not efforts are being put in to erase the misconceptions about epilepsy existing in Spain.

Latin (Hispanic) Folk Beliefs:
(Acknowledgment is given to Diversity Resources and their website, from where the following information was compiled).

luck plays a role in determining one's health and, therefore, little responsibility lies with the patient in taking action to improve health
negative forces in the environment, as well as punishment for sins, are seen to be possible causes of illness
an imbalance may be the result of illness
natural and supernatural worlds are not clearly separate from one another
family support plays an effective role in curing the patient
the caregiver's "gift" or "calling" for curing an illness is important to the patient
moaning is a way to reduce pain and to share it with others
many people "mix and match" conventional medicine with traditional remedies; often conventional medical personnel are consulted for natural diseases and folk healers are consulted for unnatural/supernatural diseases

A Health Care Guide to the Latin (Hispanic) Community:
(Acknowledgment is given to Diversity Resources, Inc., www.diversityresources.com and its book, What Language Does Your Patient Hurt In? A Practical Guide to Culturally Competent Care, from where the following information was compiled).

Tips on Developing a Healthy Professional Relationship:

shake hands at the beginning of each meeting
address adults by title (i.e. Mr. Mrs. Dr., etc.)
make eye contact

personalismo

patients should be both warmly and formally treated
ask patients about themselves and their family; this shows genuine interest and concern
sit close, lean forward,and use gestures when speaking

For additional information visit www.diversityresources.com/health2k/health/hispanic.html.

Resources:

Epilepsy Awareness

http://www.epilepsytoronto.org/people/eaupdate/vl10-1.html

A Textbook of Epilepsy

Statistics Canada

http://www.statcan.ca/english/Pgdb/People/Population/demo28b.htm

Diversity Resources Page

http://www.diversityresources.com/health2k/health/hispanic.html

Epilepsy: A Comprehensive Textbook

http://elliott.hmc.washington.edu...html

Stigma Conference Page

http://www.stigmaconference.nih.gov/abstracts/MinAbstract.htm

International Bureau for Epilepsy Page

http://www.ibe-epilepsy.org/search_det.asp?CategoryID=Archive&ID=38

Nutrition Page

http://www.rain-tree.com/tayuya.htm

http://www.neurologia.ufsc.br

(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 Latin community with respect to epilepsy.