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Ignorance is not Bliss: Epilepsy in Third World Countries
By Anna Press
Lack of education appears to be an epidemic. Of the 50 million people worldwide who have epilepsy, 85% live in developing countries. (1) Of that 85% living in developing countries it is estimated that between 70 and 90% do not receive treatment for their condition. (2) In many developing countries, where epilepsy is prevalent, there is little to no education about it. There is a plethora of horror stories one hears about the treatment of people with epilepsy in underdeveloped countries. Recently the international press related stories of women with epilepsy and other disorders being ritually beaten to have evil spirits driven out of them. This is not to say that bad treatment and stigma associated with epilepsy do not exist in developed countries- they do. Luckily, people are trying to break out of these shadows and bring epilepsy into the light in many ways.
Causes of Epilepsy in Developing Countries
In many developing countries the cause of a case of epilepsy can often be easily identified and treated. In Ecuador, for example, approximately 50% of the cases of epilepsy are due to neurocystercosis. (3) Neurocystercosis, is an infection of the central nervous system with cysticerci of the pork tapeworm. (4) The prevalence of epilepsy in rural Ecuador is 2-3%; this percentage is about 4-6 times greater than in developed countries. In 1999 preventative treatment with praziquantel for a person infected with Taenia solium (pork tapeworm) cost around 10 cents U.S. (3)
The known causes of epilepsy in developed countries, also apply in developing ones. Sometimes brain damage can induce epileptic seizures, as can brain infections, such as meningitis, brain abscess and neurosyphilis. Some other causes include: degenerative disorders, metabolic abnormalities, drugs, and a history of epilepsy in the family. (5) However, in developing countries there are some causes for epilepsy which are not as evident in developed countries. For instance, malaria, meningitis and malnutrition are not as common in developed countries. As well, a study done in Nigeria on infantile epilepsy revealed that 48% of the cases of epilepsy were induced by hypoglycemia, or birth asphyxia and infections. (6) Due to poor healthcare systems many normally preventable illnesses which can cause epilepsy are not treated, thus resulting in epilepsy.
Epilepsy Unnoticed
A study published in the May 13 issue of Neurology and conducted by the World Health Organization (WHO), the International League against Epilepsy and the International Bureau for Epilepsy as part of the Global Campaign against Epilepsy shows that more people than previously thought have epilepsy, and very few of those people are getting treatment for it. Out of all the people in China who replied to the questionnaires a total of 7 out of every 1,000 people had experienced epilepsy at some point in their lifetime, and 41 percent of all cases had never received appropriate treatment. The study found that 4.6 out of every 1,000 people had active epilepsy, and 63 percent of those had not received treatment in the week prior to the survey. Active epilepsy was defined as having two or more unprovoked seizures in the past 12 months. It is currently estimated that there are 9 million citizens of the People's Republic of China who have epilepsy. (7) This study in China was so successful in gathering results that other pilot projects are now underway in Zimbabwe, Senegal and Argentina. The 4-year, $4.6-million project will survey the number of people with epilepsy and look for ways to treat them. (8)
It should be noted that some of the treatments described below are not necessarily pervasive or practiced everywhere or exclusively in the countries and cultures named, but are still found in staggering amounts.
South America's Contribution
Many officials in developing countries are so displeased with the level of education concerning epilepsy that they have taken initiatives to inform the public. In South America, where more than 5 million people have epilepsy, and more than 3 million are left untreated, they have officially deemed September 9 to be el Dia Lationamericano de la Epilepsia (the Latin American day for Epilepsy). (9) When the day was first introduced, another initiative was also approved; with the Declaration of Santiago came the beginning of a campaign to "bring epilepsy out of the shadows." (1) The main purposes of this campaign are to: improve the comprehension of epilepsy, while reducing the stigmas attached with it; fight against discrimination towards people with epilepsy; educating those with epilepsy and facilitating treatments for them; further epilepsy research; develop national plans for all Latin American countries; aid in the publication of a document dealing with the state of epilepsy in the health system (in Latin America); create more contact between the government and society, and the World Health Organization, International Bureau for Epilepsy and the International League Against Epilepsy, among other organizations. (10) As well, many reports are underway to assess the impact of epilepsy in different countries.
Treatment Methods in Africa
In the Western World it is assumed that science is a panacea, curing anything and everything that comes our way. Medications and sleep are the most prescribed remedies, but it is not this way everywhere in the world. In certain parts of Nigeria methods which are used to resuscitate a person who is experiencing an epileptic fit include forcing the unconscious person to drink a mixture made of cow urine (which can lead to further complications), thrusting their limbs into a fire, and rubbing pepper into their eyes and face. In Cameroon the Bamileke of Maham believe that epilepsy is contagious, as do many inhabitants of other African countries. Treatment generally entails visiting a healer and undergoing dietary restrictions to help prevent the production of foam in the stomach. They believe that excess foam in the stomach rises to the head ultimately resulting in seizures. In Malawi it is also thought that seizures are the result of an abnormality in the stomach; namely, moving insects which have somehow ended up there. To cure epilepsy, a traditional healer is sought who will mix herbs and roots and upon ingestion the person will vomit (releasing the insect from within). Similarly, in Swaziland and Ethiopia the therapies are based on the idea of purification and include enemas, vomiting, inhaling medicinal substances, and even exorcism. (3)
Treatment Methods in India and China
Ayurvedic medicine has long been a popular treatment method for different illnesses in India. This type of treatment focuses on opening the heart and the mind and relieving the stresses and negative energies which are causing the seizures. This is done with enemas and purgatives, as well as ingesting purified butters (ghees) and oils cooked with drugs. Certain methods involve drugs being applied through the eyes and nose. More conventional remedies include massages and baths. Less typical remedies include cauterization of the parietal bones with needles and blood letting or venesection (Siravedha). Chinese folk medicine is a fairly common practice, also known as Dan Fang. Some of the remedies which it suggests are drinking a young girl's urine, and eating fresh human brain or goat's heart. Chinese folk medicine also recommends other forms of healing, such as herbal remedies and therapies in which needles are inserted into the skin. (3) People who are consulted by patients suffering from epilepsy can also include Religious members of the community, ranging from Taoist priests to Buddhist adepts to Muslim imams.
Western Treatment Methods Utilized in Developing Countries
Although in many third world countries medicines and methods of treatment that are endemic to certain regions are the most popular treatments for epilepsy, some western medicine is used. The most common of which is phenobarbitone; it is the most cost efficient and is also chosen for its efficacy. Other drugs such as Valproate may cost up to 15 times as much as phenobarbitone. Although there are occasionally adverse effects, it is a better alternative than no treatment whatsoever. A study in rural India showed that 65% of patients treated with phenobarbitone displayed positive results- the same amount as those who received treatment with phenytoin, a more expensive alternative. (6) Although inexpensive and practical drugs could be responsible for treating about 75% of the people with cases of epilepsy, WHO researchers have found that the amount of medicine currently being produced is only enough to treat 20% of people with epilepsy around the world. (8) Although there is not enough medication to treat every person with epilepsy in the world, there is a large amount produced each year. However, in order to obtain the medications patients must first see a professional. Unfortunately, in many of the countries there are not a substantial amount of health care providers to support the population's needs. In India, for example there are about 3,000 psychiatrists and, 565 neurologists to serve a billion people, while in Zimbabwe there are 10 psychiatrists and 29 neurologists to serve 11 million people. (11)
However, many people in third world countries do consult physicians, clinics and hospitals upon discovery of epilepsy. In fact, in a study done in the Henan province of China, 55% of people who responded to the survey said that a visit to the doctor would be their first method of discourse. (3) Something else which China practices is integrating their traditional types of medicine, and beliefs into the Western way of doing things. The traditional Chinese methods of treating illnesses focus on all parts of the body instead of concentrating on one area (which is the case with Western medicine). In certain cases Western treatments can be more effective, but with more adverse side effects. Therefore, many medical practitioners have adapted their treatment styles by incorporating both types of medicine- traditional Chinese and Western. This amalgamation of medical styles is not just the case in China; in fact it has also been seen in India, and other developing nations around the world.
Abuse and Depression: Negative Consequences
In developed countries, although there is still a fair amount of stigma attached to epilepsy, there is also a lot more awareness. Conversely, in third world countries there is a large amount of stigma and not enough education. In fact, the results of a survey done at a Medical School in Nigeria showed that 40% of medical students were not sure that epilepsy was not contagious. This lack of understanding makes it easy to see why people do not know how to react when they learn that a family member, friend or member of the community is experiencing symptoms of epilepsy. With this confusion comes anger and negative feelings whether it's because the person cannot control themselves, or because they just don't understand any of the circumstances surrounding this illness. This is why it is fairly common to hear of abuse towards epilepsy patients. In an area of Kenya that is inhabited by nomadic people (the Samburu tribal lands, seven hours north of Nairobi) a 14 year old girl was buried alive by her own parents because they believed that she was possessed and was harbouring evil spirits. (12) This is not an isolated incident; many instances of abuse towards people with epilepsy occur daily-especially in third world countries. This abuse is not limited to the physical, as people with epilepsy are often shunned and verbally abused as well, told that they will get nowhere in life - that they are outcasts and failures. An example of this would be a situation which occurred in Haiti. Bishop Thomas Gumbleton, the Auxiliary Bishop of the Catholic Archdiocese of Detroit and Bill Quigley, a law professor at Loyola University New Orleans School of Law visited Port-au-Prince, Haiti on a human rights delegation for Pax Christi USA. In a 12 foot by 12 foot prison cell they found 36 males as well as a few youth (aged 13 and 15) and people with mental problems and epilepsy. The conditions were terrible; they were forced to sleep upright because there wasn't enough room to sit down let alone lie down, they were physically brutalized, there was no medical care and food was not provided. Many of the families of people inside the cell were not aware of where their relatives were. Many had been arrested for no valid reason, and had yet to see a judge, speak with a lawyer, or contact people outside of the prison. (13)
People with epilepsy do not just run the risk of being abused but in fact it has been proven that people with epilepsy, unfortunately, have a fairly high rate of depression. In a study done by Dr. Ettinger, Dr. Michael Reed, and Joyce Cramer for the Epilepsy Impact Project Group, and made possible in part by GlaxoSmithKline it was determined that 36.5% of people with epilepsy who were surveyed were also depressed. Conversely, only 12% of healthy patients reported any signs or symptoms associated with depression. Its results have been published in the September issue of the journal Neurology. This depression can lead to suicide. On November 18, in New Delhi a 19 year old girl named Poonam Singh hanged herself. It is thought that the motivation for her suicide was her epilepsy; she had felt isolated because of it, leading to depression and eventually taking her own life. (14)
Conclusion
Although many steps have been taken to try and reduce the stigma attached to epilepsy, more must still be done. New projects and initiatives are constantly underway to help educate people about epilepsy, and to promote the idea that people with epilepsy are no different to those who do not have it. Epilepsy can be a burden, but it can also be a blessing- one must accept it, and gradually learn to live with it. As singer-songwriter Vusi Mahlasela says "I'd like to say to anyone who has been diagnosed with epilepsy that you must never despair, never give up on your vision. You are special, one of the chosen ones. Nourish what is special about yourself, find your true calling - whatever it may be - and follow it. Don't give up, and you will eventually see results." (15) Do not let epilepsy be an impediment in life; help those around you who need it. Just because initiatives are underway, it does not mean that problems will vanish- people in developing nations still need a lot of help. Do not despair, but do not forget about those who are so truly in need.
References
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Last Modified: 06/30/2006 10:53:39 AM
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