Epilepsy Ontario :: Epilepsy in Africa and the African American Community

Epilepsy in Africa and the African American Community

Compiled by: Puja Sahni

Introduction:

African Americans are the third largest minority group in Canada, according to Statistics Canada's 1996 Census. This community accounts for approximately 18% of Canada's total visible minority population, and 21% of Ontario's alone. With a growing community, it is only appropriate to develop a greater understanding of the cultural beliefs and traditions that are likely to grow with it. The following paragraphs reveal how African Americans approach epilepsy treatment, as well as any traditional or spiritual beliefs they may hold towards the disorder. In addition, culture-sensitive health care will be explored which will hopefully encourage healthy, barrier-free relationships between caregivers and patients of this culture.

Because African Americans have been in North America for many generations, many have adapted well to the Western society and cultural barriers may not seem to be an issue. Still, it is important to note that beliefs and practices of Canadian or American-born Africans may have been influenced by the beliefs held by recent African immigrants, and vice-versa.

It is important to note that all beliefs and perceptions explored here are only generalizations made based on studies and surveys done in the past and do not, by any means, apply to individual cases. Each patient is unique and may hold traditions and beliefs unfamiliar to others of the same culture.
Epilepsy in Africa, and in the African American community, will be explored through the following:

Epilepsy in Africa
African Americans and Epilepsy
Socio-cultural Issues and Epilepsy
African American Fold Medicine
Determining if a Patient Believes in Folk Medicine

Epilepsy in Africa:
(Acknowledgment is given to Epilepsy Toronto. Much of the following information was compiled from their article "Epilepsy in Different Cultures", written by Lis Francesca Andermann, Mphil, MD, 1999. Acknowledgment is also given to Epilepsy: A Comprehensive Textbook chapter 272 written by Bolanle Adamolekun).

Africa is a diverse continent, and represents people of different cultural backgrounds. Before discussing African Americans and culture sensitive health care, attitudes towards epilepsy will be explored in countries such as Nigeria, Uganda, Cameroon, Malawi, Swaziland and Ethiopia. Throughout these different countries exists various traditional beliefs pertaining to epilepsy and its causes and treatments. These beliefs, however, keep 80% of epilepsy patients in Africa from receiving proper treatment. There are approximately 3 to 4 million people living with epilepsy in Africa, and conventional medication may allow more of these people to improve their lifestyles.

In Nigeria, Africa's most populous country, the prevalence of epilepsy varies from approximately 0.53% to 3.7%, depending on the part of the country and its respective development and available health care facilities. The further developed and the better the health care facilities, the lower the prevalence rate. However, approximately 70% of the country's population resides in the rural areas, where facilities are lacking. The age groups accounting for the highest prevalence rates for epilepsy are those in the first twenty years of life and, unfortunately, children fifteen years of age or younger constitute almost half of Nigeria's total population.

A survey conducted in western Nigeria found that only 3.9% of people with epilepsy were using conventional anti-seizure medication, despite the village's relatively good health care facilities.

Nigeria, alone, has more than 250 different cultures and, as a result, traditional medicine lacks consistency. Traditional healers in Nigeria include herbalists, bone setters and traditional birth attendants as well as those who deal with simple surgery, mental diseases and therapeutic occultism. Alternative therapies are often used prior to any consultation at conventional health care facilities. The majority of patients living with epilepsy are encouraged by family and friends to resort to alternative medicine.

Herbal therapy is the most popular form of traditional medicine in Nigeria. Herbal remedies for epilepsy are usually mixtures of plants having an anti-seizure, antipyretic, or antibacterial effect. One remedy used in western Nigeria contains the fruits of Tetrapleura Tetraptera Taub and the leaves of Nicotiana Tabacum Linn. Sometimes, these plants are combined with locally distilled gin. This mixture has been known to cause permanent cerebral damage in children.

Spiritual healers are also common in Nigeria because epilepsy is thought to be related to a visitation by the devil, to witchcraft or to spirits. Ritual dances, incantations, propitiatory rites and exorcism are practised to rid the patient of the disorder.

A common problem in Nigeria is that epilepsy is thought to be contagious, and that belief is even popular among medical school students. A belief of the Bini of Nigeria is that epilepsy is a disease where the heart gets blocked by foam, restricting circulation and resulting in a seizure. Treatment includes thrusting the patient's limbs into a fire, rubbing pepper into their eyes and face, and making an unconscious person drink a cow's urine, a treatment that can lead to aspiration pneumonia.
Below are the perceptions of epilepsy in different countries throughout Africa and any herbal or spiritual remedies used to "cure" or treat the disorder.

Country	Specific Thoughts and Beliefs	Special Herbal and Spiritual Remedies (not clinically proven effective)
Uganda	- epilepsy is called ensimbu and refers to tonic-clonic (grand mal) seizures - epilepsy thought to be contagious - illness brought on by witchcraft - a lizard spinning around in circles in the head is disturbing the brain causing dizziness, usually followed by a seizure - social constraints, where the person has to eat and sleep alone, leave school, not play with other children and, most likely, not marry	- because ensimbu is thought to be a result of witchcraft, it is believed that western medicine is not effective - to treat the lizard in the brain, cupping is used to remove the lizard, along with additional medication - severe burns are used by physicians as an aid in diagnosing epilepsy, since cooking fires are so common in Africa, and people convulsing fall into the fires - according to traditional healers, burns are a sign that the disorder is incurable
Cameroon	- epilepsy thought to be contagious and brought on by witches - epilepsy is known as nwaa or "to throw a person on the ground." - the term also refers to saturation of the foams in the stomach which overflow and rise to the head, resulting in a seizure - people with epilepsy are Athose who die and are resurrected" and are thought to be possessed by the devil	- traditional healers are consulted - a special diet is assigned to control the foam being produced in the stomach
Malawi	- an insect moving inside the stomach is thought to cause epilepsy	- traditional healers, with their mixtures of roots, are consulted - these mixtures induce vomiting which is thought to rid the stomach of the insect
Swaziland	- epilepsy is known as sifosekuwa (falling disease) or sitfuluwane (lizard=s movement) - caused by sorcery, which sends evil animals or spirits into the body, causing convulsions	- therapies work to purify and protect - therapies include enemas, inhaling medical fumes, vomiting, sneezing and exorcism
Ethiopia	- epilepsy is known as the Aspinning" or Arotary" illness	- holy waters, priests and spirit specialists (dealing with exorcism and sacrifices) are visited - charms and traditional remedies - patients do not visit a hospital for up to five or six years because of societal pressures and a belief in spiritual therapy

African Americans and Epilepsy:
(Acknowledgment is given to Rapid Assessment Procedures - Qualitative Methodologies for Planning and Evaluation of Health Related Programmes, from where parts of the following information were collected).

Studies carried out in the United States have found that the prevalence of epilepsy among African Americans is higher than that of Caucasians and Hispanics. The prevalence rate is somewhere between 0.010 and 0.012% for African Americans, which is relatively high compared to 0.007% and 0.009% for Whites and Hispanics, respectively. In addition, the risk of seizures during a lifetime is only 10% among Caucasians; whereas, it is 25% for African Americans.

Additional studies have shown that there are still many misconceptions existing within many cultural communities, where only tonic-clonic (grand mal) seizures are recognized as epilepsy. Within the African American community in particular, it was found that, often, complex partial and absence seizures were not recognized as epilepsy because of the less dramatic symptoms that accompany them. African Americans commonly labelled non-convulsive seizures as "nervous conditions" or nervous breakdowns, emotional stress or insanity.

When seizures are not recognized as epilepsy, patients were often sent to seek treatment via ministers, priests, spiritualists, practitioners, spiritualists, and herbalists based on evident symptoms. These alternatives were also sought by those already using conventional treatment in the form of anti-seizure drug therapy. Unfortunately, there was a lack of consistency when taking the medication. Alternative therapies were also sought if conventional medications were not controlling the seizures, because it was thought that the illness may not only be medical in nature.

Socio-cultural Issues and Epilepsy:

The stigma associated with epilepsy among the African American community is not as drastic as that found within other cultures; however, it does exist. African American patients with epilepsy feel that there is a difference in the way they are treated by society, as well as by family and friends. In the general community, problems exist in the form of job discrimination and isolation. With respect to family and friends, overprotection and restriction of activities interfere with their daily lives, as they are often seen as socially and intellectually less capable than the remainder of the population.

Stigma is often associated with fear. Among the African American community, there is often a fear of witnessing a seizure. When asked why they fear this, many people reported that they fear not knowing what action to take when seeing someone in a seizure state.

An article written by Regina Reid of EpilepsyUSA, titled "U.S. Minorities Not Receiving Equal Treatment in Health Care", talks about the many problems that minority groups face when receiving health care. It states that a survey conducted by a health research foundation in New York revealed that Hispanics, Asians, and African Americans experience "difficulty communicating with doctors, such as not understanding the doctor or feeling that the doctor didn't listen to them or treat them with respect." The article also quotes a source that described a lower quality of health care being provided to African American patients.

African American Folk Medicine:
(Acknowledgment is given to Rick Ansorge of the Colorado Springs Gazette and author of "Herb's roots are in African-American folk medicine," an article from which parts of the following information were compiled. Acknowledgment is also 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 which some of the following information was also compiled).

African American folk medicine has a long history and was practised most heavily in the early 1900s. Conventional medical care was not available to the African American community during the slavery era. As a result, many traditional remedies and cures were formulated from easily-obtained material, such as herbs, clay, spider webs, axle grease and turpentine. Many remedies were also borrowed from other cultures, such as the American Indians, Anglo-Americans, and Haitian voodoo healers.

Although many, during the slavery era, were credited as exceptional healers, African American folk medicine went on to receive very little acknowledgment. Just like other traditional systems of care, such as Chinese and Indian medicine, African American medicine includes certain remedies with medical value and others without. Many believe that the placebo effect plays a large role in traditional medication because of the strong religious and spiritual beliefs of the patient.

African American folk medicine was sometimes seen to be dangerous because it could cause just as much harm as it did good. Evil spells could be cast and small bags of evil potions were left on enemy doorsteps. Elaborate ceremonies were performed to bring both good and evil spirits into the remedies.

Slavery prevented African Americans from becoming literate and, therefore, it was not until after the Civil War that written works containing the practices of African American folk medicine became available in print. Prior to the Civil War, the medical and spiritual traditions were verbalized from person-to-person. In the United States, Voodoo medicine is still practised in Louisiana and western Missouri, and in other areas where black communities are significantly large. Some traditional medicines, such as goldenrod, evening primrose, and saw palmetto are still available in health food stores.

Folk Beliefs of Some African Americans relating to Illness and Health Care:

www.diversityresources.com/health2k/health/african2.html

Traditional African American Folk Healers:

Common names among folk healers are healers, herb doctors, root doctors, root workers, readers, advisors, spiritualists and conjurors.

Determining if a Patient Believes in Folk Healing:
(Acknowledgment is given to Diversity Resources from where much of the following information was compiled).

It is important to remember that a patient using folk medicine may not feel comfortable admitting this to medical personnel. It is also imperative that the caregiver does not appear judgmental or critical, and that they listen carefully to the patient with hopes of understanding their non-conventional views on epilepsy. It is important for the caregiver to be aware of any beliefs or home remedies being taken by the patient since they may conflict with conventional medicines or may be dangerous to the patient's health.

As a caregiver, you may want to inquire about the patient's beliefs on the cause(s) of their epilepsy in a somewhat docile manner. If the patient informs you of the traditional remedies being taken, and you feel that they may be harmful or may not comply with the medication being prescribed, it is best to recommend against their use.

Some Indicators of African American Folk Medicine Usage:

- wearing of charms or amulets, such as

silver dime, believed to turn black if the person is being threatened by another
asafetida amulet of rotten flesh worn around the neck, believed to protect against contagious diseases (thought to have worked because the bad smell kept others at a distance)
copper of silver wrist bracelets that are believed to detect early signs of illness when the skin underneath turns black

For more information on Culture-Specific Health Care and the African American community, visit www.diversityresources.com/health2k/health/african2.html.

Resources:

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

http://statcan.english/Pgdb/People/Population/demo40b.htm

http://www.diversityresources.com/health2k/health/african2.html

http://www.cdc.gov/mmwr/preview/mmwrhtml/00033483.htm

http://www.efa.org/epusa/05282002/minority_health_care.html

http://www.personalmd/news/n0508104703.shtml

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