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Fifty Years Epilepsy Clinic and Research in Mahenge, Tanzania
By Dr. Louise Jilek-Aall
In 1959, after having studied tropical medicine, I worked for three years as a physician in Tanganyika, now Tanzania. I discovered that an astonishing number of the Wapogoro people of the Mahenge mountains in the interior of Tanzania suffered from epilepsy, called kifafa in Suahili. These people had never received medical treatment for epilepsy, as this was believed to be an African disease not treatable by modern medicine, and they suffered greatly from frequent convulsive seizures. Because of the belief that kifafa was caused by evil spirits, the epilepsy sufferers were feared and shunned, even by their own family members. Some came to the hospital dispensary, not for their seizures, but because of burns and other injuries incurred during seizures. It took me a long time to understand that the burns were caused by the person falling into the domestic fire, as nobody dared to rescue the convulsing person. Out of fear of the avenging kifafa spirit, the epilepsy sufferers faced discrimination and neglect among their own people and lead miserable lives in humiliation and fear. They were malnourished and often perished from burns when falling into the open fire, or through drowning when fetching water or fishing in the river, or simply from marasmus and intercurrent diseases.
In the Western world of today, one does not often encounter persons suffering from tonic-clonic seizures for years without medical treatment. However, in many non-Western rural areas, where treatment facilities and health professionals are scarce, such persons suffer convulsive seizures, sometimes several times a day and often with post-ictal confusion and fugue states. As I observed in Mahenge, they may die in status epilepticus or develop severe depression, psychotic states, and Parkinsonian symptoms.
Seeing the incredible misery of epilepsy sufferers, I founded the Mahenge Epilepsy Clinic in 1960. Patients and their families first received education about epilepsy and its treatment. Only when full cooperation by patients and their families had been established was therapy started with phenobarbital and phenytoin, which were the only accessible antiepileptic medication. About 200 kifafa sufferers were examined and their treatments initiated during the first two years of the clinic. The two medications, phenobarbital and phenytoin, turned out to be astonishingly effective. Not only was the seizure frequency greatly reduced, in several cases the attacks ceased completely; the patients brightened up and most of the mental symptoms were alleviated.
When, after some years, I had to leave, the clinic was kept alive by a nurse who kept in contact with me by regular consultative correspondence. I was able to secure regular medication supplies through donations by myself and friends for many years.
In 1972, the epilepsy clinic that I had established at the Dispensary of the Kwiro Catholic Mission in Mahenge was taken over by the Tanzanian Government and placed under the newly established Mental Health Center of the Mahenge Government Hospital. The Mental Health Centre was staffed with one nurse who had to treat patients with mental illness and epilepsy. From then on, basic medication was provided by the Tanzanian Government, as in other public hospitals. However, the Government has not always been able to supply sufficient antiepileptic medication, and from time to time it had to be supplemented with donations by myself and other donors I could find. The Mental Health Centre was inundated with epilepsy patients, while the number of purely psychiatric patients remained minimal.
In 1989, the Tanzanian neurologist Dr. Henry Rwiza returned to Tanzania after completing his specialist training in the Netherlands under my friend Prof. Harry Meinardi, a renowned neurologist who specialized in epilepsy. Prof. Meinardi had made Dr. Rwiza aware of the epilepsy clinic in Mahenge, with the result that Dr. Rwiza conducted an epidemiological survey of convulsive disorders in the Ulanga district in which Mahenge is situated. To his great surprise he confirmed what I stated some 30 years earlier, namely, that the prevalence of epilepsy in Mahenge was much more than ten times higher than was known in Western countries. The Mahenge Epilepsy Clinic was expanded in 1990 when I revisited the area to plan a research project together with Dr. Rwiza and Dr. William Matuja-both neurologists at the University Hospital in Dar-es Salaam-to investigate the etiology and clinical characteristics of kifafa and the reasons for the high prevalence of convulsive disorders among the Wapogoro people. This research was approved and funded for three years by the International Development Research Centre in Canada (IDRC) in 1991 and carried out by teams of scientists from the University of British Columbia, Canada, and from the University of Dar-es Salaam, Tanzania, under my leadership and in cooperation with Drs. Rwiza and Matuja. The research team found many possible causes of epilepsy, as exist in most tropical regions, such as birth trauma; parasitic, bacterial or viral infections of the brain; head injuries; or genuine epilepsy with hitherto unknown causes or due to a genetic disposition. But I felt that these general causes could not explain the very high prevalence of the affliction in this population. Kifafa is a severe form of epilepsy, often associated with other neurological symptoms and, if untreated, with mental problems; hence, chronic epilepsy sufferers are usually treated at mental health centres in rural Tanzania.
Since 1991, the Mahenge Epilepsy Clinic has accepted new epilepsy suffers and has at times treated more than one thousand patients. Contrary to general prediction, most patients have turned out to be quite reliable in taking the medication regularly and as prescribed, for years on end. Their compliance and the cooperation of their families have been possible through the continued health education on epilepsy by myself, Dr. Matuja, and the clinic nurse. The people of Mahenge have now increasingly experienced how the terrifying affliction of kifafa can be controlled by modern medicine. During the 50 years the clinic has now been operating, the general attitude toward epilepsy among the local population has changed, and many of the well controlled patients have been accepted back into their families and are able to live a life close to normal, even though only the basic antiepileptic drugs phenobarbital, phenytoin, and now carbamazepin are available.
For a long time I had found it striking that many of the kifafa sufferers were also infested with the filaria parasite Onchocerca volvulus, but my suggestion of a connection between this parasite and the high prevalence of kifafa was rejected by the African and Western colleagues I consulted. Just at the end of our research project in 1994, I found out that epidemiologic research, carried out by parasitologists from the Aga Khan Hospital of Dar-es Salaam, had shown that the Mahenge mountains are the area of the heaviest infestation with Onchocerca volvulus in Tanzania. I therefore began to plan for a new research project and searched for funding to organize a research team that could take up this challenge, together with a university research laboratory with access to modern brain investigations. It took years to realize such an undertaking.
In the meantime the nurse at Mahenge Epilepsy Clinic has been carrying on with the difficult task of maintaining regular treatment for hundreds of patients suffering from epilepsy. The first motorbike, which I donated to the clinic in 1992 so that the nurse could reach patients living scattered all over the mountain area, became completely out of repair. I was able to solicit the donation of a new motorbike in 2003 through a Rotary Club in Canada.
I then discovered that the clinic had been moved outside the hospital to a place amongst dilapidated storage sheds. Together with local people and friends form Canada, I restored the clinic building and waiting area to an acceptable degree during my visit in 2003.
In the summer of 2005, I was finally able to get together sufficient funds for a team of researchers to accompany me to Mahenge for an in-depth aetiological investigation of the high prevalence of epilepsy there. Besides myself, members of the research team included Prof. Erich Schumutzhard (Univ. of Munich, Germany), the internationally known expert in tropical neurology; Dr. Andrea Winkler (Univ. of Munich, Germany), the neurologist with African experience; Prof. William Matuja (Univ. of Dar-es Salaam, Tanzania), a long-standing co-researcher in Mahenge; and senior medical students.
Through intensive field work we were able to examine a great number of the clinic patients, together with healthy controls, and collect biological materials, such as blood, cerebrospinal fluid and skin samples, to take back to Europe for further sophisticated laboratory tests. We also selected some of the patients and controls for electro-encephalographic and magnetic resonance studies at the Aga Khan Hospital in Dar-es Salaam.
Our examinations confirmed the presence of a new type of epileptic seizure in children, the Head Nodding Syndrome leading to convulsive attacks in later life. I had already observed and described the Head Nodding Syndrome in the 1960s, but since it was unknown in Western countries, the existence of this epilepsy syndrome had been ignored. However, the Head Nodding Syndrome is accepted today and attracts international attention among experts.
Our research has been continued with another field investigation in 2009. Unfortunately, the costs of the complicated investigations have been high, and we are still struggling to get sufficient funds in order to complete the study of the possible connection between onchocerciasis and epilepsy.
Another challenge is how to help the Mahenge Epilepsy Clinic continue to give adequate treatment for the many epilepsy sufferers. Prof. Matuja, as president of the Tanzania Epilepsy Association, is trying to get the Tanzanian Government to provide modern medication for the patients suffering from epilepsy. He is also asking for an additional nurse to be posted at the Mahenge Epilepsy Clinic to assist the mental health nurse in coping with the treatment for a growing number of epilepsy patients.
One of the problems people with epilepsy are facing is the general belief in Tanzania, as in many other parts of the world, that people with epilepsy, even when under treatment, are not fit for employment. In Tanzania, people with epilepsy together with other persons suffering from chronic illnesses, are called maskini, meaning the "useless ones", the ones who are a burden to others. They are expected to be humble, to accept without protest the poorest kinds of food and clothing, and to endure any mistreatment people may expose them to. But in reality there is no reason why a treated epilepsy patient could not work. I have observed a few of the recovering patients in Mahenge who secured themselves jobs that earned them a small amount of money. The pride and prestige patients felt when being able to contribute something to their family was of immeasurable emotional benefit to the kifafa. As a result, for a long time I tried to find a way of helping recovering epilepsy patients secure employment.
The Catholic Seminary Kasita is close to Mahenge village where the Government Hospital and the Mahenge Epilepsy Clinic are situated. This seminary has large vegetable gardens, a well established reforestation project, and some farm animals, and needs workers for a variety of jobs. In 2005 the Rector of Kasita Seminary agreed to my suggestion of hiring some of the patients from the epilepsy clinic whom the nurse considered capable of doing this kind of work, as I offered to pay part of their wages.
On my return to Mahenge in 2009, I found out that only a few of the patients had been able to stay on the job for any length of time. Upon interviewing the patients involved, their non-epileptic co-workers, and the overseers, it became clear to me that such a rehabilitation program needed a firm structure to enable epilepsy patients to adjust to a regular work schedule and to be integrated into a work team.
Therefore, I prepared a program for a one-year pilot project for which a group of suitable recovering clinic patients was selected; 10 patients would work full time, any drop-out would be replaced by another candidate. They were paid the same wages as other workers, which was made possible through donations by myself and Canadian friends and was facilitated by the Savoy Foundation Epilepsy in Quebec, Canada. The working patients were followed closely by a supervisor who was to address any arising problems, report to me, and receive my advice. Most of the chronic epilepsy patients had to be helped to overcome their low self-esteem, timidity, and despondency, due to the psychological trauma they had suffered when they were stigmatized as the "useless ones". The objective was that recovering epilepsy patients learnt to take responsibility for regular job performance and be accepted as equals by other workers, so that later on they would be able to find employment elsewhere.
At the end of 2010, we [were] able to demonstrate that most participants in the one-year pilot project were capable of working in gainful employment after going through a period of learning and adjustment. The patients' quality of life and their acceptance by family and community greatly improved. The success of this pilot project shows that recovering epilepsy patients are able to become productive members of the community. This should encourage the Tanzanian authorities to promote the establishment of a permanent work rehabilitation centre for recovering epilepsy patients, in connection with the Mahenge Epilepsy Clinic and the Tanzania Epilepsy Association chaired by Prof. Matuja.
In 1959, after having studied tropical medicine, I worked for three years as a physician in Tanganyika, now Tanzania. I discovered that an astonishing number of the Wapogoro people of the Mahenge mountains in the interior of Tanzania suffered from epilepsy, called kifafa in Suahili. These people had never received medical treatment for epilepsy, as this was believed to be an African disease not treatable by modern medicine, and they suffered greatly from frequent convulsive seizures. Because of the belief that kifafa was caused by evil spirits, the epilepsy sufferers were feared and shunned, even by their own family members. Some came to the hospital dispensary, not for their seizures, but because of burns and other injuries incurred during seizures. It took me a long time to understand that the burns were caused by the person falling into the domestic fire, as nobody dared to rescue the convulsing person. Out of fear of the avenging kifafa spirit, the epilepsy sufferers faced discrimination and neglect among their own people and lead miserable lives in humiliation and fear. They were malnourished and often perished from burns when falling into the open fire, or through drowning when fetching water or fishing in the river, or simply from marasmus and intercurrent diseases.
In the Western world of today, one does not often encounter persons suffering from tonic-clonic seizures for years without medical treatment. However, in many non-Western rural areas, where treatment facilities and health professionals are scarce, such persons suffer convulsive seizures, sometimes several times a day and often with post-ictal confusion and fugue states. As I observed in Mahenge, they may die in status epilepticus or develop severe depression, psychotic states, and Parkinsonian symptoms.
Seeing the incredible misery of epilepsy sufferers, I founded the Mahenge Epilepsy Clinic in 1960. Patients and their families first received education about epilepsy and its treatment. Only when full cooperation by patients and their families had been established was therapy started with phenobarbital and phenytoin, which were the only accessible antiepileptic medication. About 200 kifafa sufferers were examined and their treatments initiated during the first two years of the clinic. The two medications, phenobarbital and phenytoin, turned out to be astonishingly effective. Not only was the seizure frequency greatly reduced, in several cases the attacks ceased completely; the patients brightened up and most of the mental symptoms were alleviated.
When, after some years, I had to leave, the clinic was kept alive by a nurse who kept in contact with me by regular consultative correspondence. I was able to secure regular medication supplies through donations by myself and friends for many years.
In 1972, the epilepsy clinic that I had established at the Dispensary of the Kwiro Catholic Mission in Mahenge was taken over by the Tanzanian Government and placed under the newly established Mental Health Center of the Mahenge Government Hospital. The Mental Health Centre was staffed with one nurse who had to treat patients with mental illness and epilepsy. From then on, basic medication was provided by the Tanzanian Government, as in other public hospitals. However, the Government has not always been able to supply sufficient antiepileptic medication, and from time to time it had to be supplemented with donations by myself and other donors I could find. The Mental Health Centre was inundated with epilepsy patients, while the number of purely psychiatric patients remained minimal.
In 1989, the Tanzanian neurologist Dr. Henry Rwiza returned to Tanzania after completing his specialist training in the Netherlands under my friend Prof. Harry Meinardi, a renowned neurologist who specialized in epilepsy. Prof. Meinardi had made Dr. Rwiza aware of the epilepsy clinic in Mahenge, with the result that Dr. Rwiza conducted an epidemiological survey of convulsive disorders in the Ulanga district in which Mahenge is situated. To his great surprise he confirmed what I stated some 30 years earlier, namely, that the prevalence of epilepsy in Mahenge was much more than ten times higher than was known in Western countries. The Mahenge Epilepsy Clinic was expanded in 1990 when I revisited the area to plan a research project together with Dr. Rwiza and Dr. William Matuja-both neurologists at the University Hospital in Dar-es Salaam-to investigate the etiology and clinical characteristics of kifafa and the reasons for the high prevalence of convulsive disorders among the Wapogoro people. This research was approved and funded for three years by the International Development Research Centre in Canada (IDRC) in 1991 and carried out by teams of scientists from the University of British Columbia, Canada, and from the University of Dar-es Salaam, Tanzania, under my leadership and in cooperation with Drs. Rwiza and Matuja. The research team found many possible causes of epilepsy, as exist in most tropical regions, such as birth trauma; parasitic, bacterial or viral infections of the brain; head injuries; or genuine epilepsy with hitherto unknown causes or due to a genetic disposition. But I felt that these general causes could not explain the very high prevalence of the affliction in this population. Kifafa is a severe form of epilepsy, often associated with other neurological symptoms and, if untreated, with mental problems; hence, chronic epilepsy sufferers are usually treated at mental health centres in rural Tanzania.
Since 1991, the Mahenge Epilepsy Clinic has accepted new epilepsy suffers and has at times treated more than one thousand patients. Contrary to general prediction, most patients have turned out to be quite reliable in taking the medication regularly and as prescribed, for years on end. Their compliance and the cooperation of their families have been possible through the continued health education on epilepsy by myself, Dr. Matuja, and the clinic nurse. The people of Mahenge have now increasingly experienced how the terrifying affliction of kifafa can be controlled by modern medicine. During the 50 years the clinic has now been operating, the general attitude toward epilepsy among the local population has changed, and many of the well controlled patients have been accepted back into their families and are able to live a life close to normal, even though only the basic antiepileptic drugs phenobarbital, phenytoin, and now carbamazepin are available.
For a long time I had found it striking that many of the kifafa sufferers were also infested with the filaria parasite Onchocerca volvulus, but my suggestion of a connection between this parasite and the high prevalence of kifafa was rejected by the African and Western colleagues I consulted. Just at the end of our research project in 1994, I found out that epidemiologic research, carried out by parasitologists from the Aga Khan Hospital of Dar-es Salaam, had shown that the Mahenge mountains are the area of the heaviest infestation with Onchocerca volvulus in Tanzania. I therefore began to plan for a new research project and searched for funding to organize a research team that could take up this challenge, together with a university research laboratory with access to modern brain investigations. It took years to realize such an undertaking.
In the meantime the nurse at Mahenge Epilepsy Clinic has been carrying on with the difficult task of maintaining regular treatment for hundreds of patients suffering from epilepsy. The first motorbike, which I donated to the clinic in 1992 so that the nurse could reach patients living scattered all over the mountain area, became completely out of repair. I was able to solicit the donation of a new motorbike in 2003 through a Rotary Club in Canada.
I then discovered that the clinic had been moved outside the hospital to a place amongst dilapidated storage sheds. Together with local people and friends form Canada, I restored the clinic building and waiting area to an acceptable degree during my visit in 2003.
In the summer of 2005, I was finally able to get together sufficient funds for a team of researchers to accompany me to Mahenge for an in-depth aetiological investigation of the high prevalence of epilepsy there. Besides myself, members of the research team included Prof. Erich Schumutzhard (Univ. of Munich, Germany), the internationally known expert in tropical neurology; Dr. Andrea Winkler (Univ. of Munich, Germany), the neurologist with African experience; Prof. William Matuja (Univ. of Dar-es Salaam, Tanzania), a long-standing co-researcher in Mahenge; and senior medical students.
Through intensive field work we were able to examine a great number of the clinic patients, together with healthy controls, and collect biological materials, such as blood, cerebrospinal fluid and skin samples, to take back to Europe for further sophisticated laboratory tests. We also selected some of the patients and controls for electro-encephalographic and magnetic resonance studies at the Aga Khan Hospital in Dar-es Salaam.
Our examinations confirmed the presence of a new type of epileptic seizure in children, the Head Nodding Syndrome leading to convulsive attacks in later life. I had already observed and described the Head Nodding Syndrome in the 1960s, but since it was unknown in Western countries, the existence of this epilepsy syndrome had been ignored. However, the Head Nodding Syndrome is accepted today and attracts international attention among experts.
Our research has been continued with another field investigation in 2009. Unfortunately, the costs of the complicated investigations have been high, and we are still struggling to get sufficient funds in order to complete the study of the possible connection between onchocerciasis and epilepsy.
Another challenge is how to help the Mahenge Epilepsy Clinic continue to give adequate treatment for the many epilepsy sufferers. Prof. Matuja, as president of the Tanzania Epilepsy Association, is trying to get the Tanzanian Government to provide modern medication for the patients suffering from epilepsy. He is also asking for an additional nurse to be posted at the Mahenge Epilepsy Clinic to assist the mental health nurse in coping with the treatment for a growing number of epilepsy patients.
One of the problems people with epilepsy are facing is the general belief in Tanzania, as in many other parts of the world, that people with epilepsy, even when under treatment, are not fit for employment. In Tanzania, people with epilepsy together with other persons suffering from chronic illnesses, are called maskini, meaning the "useless ones", the ones who are a burden to others. They are expected to be humble, to accept without protest the poorest kinds of food and clothing, and to endure any mistreatment people may expose them to. But in reality there is no reason why a treated epilepsy patient could not work. I have observed a few of the recovering patients in Mahenge who secured themselves jobs that earned them a small amount of money. The pride and prestige patients felt when being able to contribute something to their family was of immeasurable emotional benefit to the kifafa. As a result, for a long time I tried to find a way of helping recovering epilepsy patients secure employment.
The Catholic Seminary Kasita is close to Mahenge village where the Government Hospital and the Mahenge Epilepsy Clinic are situated. This seminary has large vegetable gardens, a well established reforestation project, and some farm animals, and needs workers for a variety of jobs. In 2005 the Rector of Kasita Seminary agreed to my suggestion of hiring some of the patients from the epilepsy clinic whom the nurse considered capable of doing this kind of work, as I offered to pay part of their wages.
On my return to Mahenge in 2009, I found out that only a few of the patients had been able to stay on the job for any length of time. Upon interviewing the patients involved, their non-epileptic co-workers, and the overseers, it became clear to me that such a rehabilitation program needed a firm structure to enable epilepsy patients to adjust to a regular work schedule and to be integrated into a work team.
Therefore, I prepared a program for a one-year pilot project for which a group of suitable recovering clinic patients was selected; 10 patients would work full time, any drop-out would be replaced by another candidate. They were paid the same wages as other workers, which was made possible through donations by myself and Canadian friends and was facilitated by the Savoy Foundation Epilepsy in Quebec, Canada. The working patients were followed closely by a supervisor who was to address any arising problems, report to me, and receive my advice. Most of the chronic epilepsy patients had to be helped to overcome their low self-esteem, timidity, and despondency, due to the psychological trauma they had suffered when they were stigmatized as the "useless ones". The objective was that recovering epilepsy patients learnt to take responsibility for regular job performance and be accepted as equals by other workers, so that later on they would be able to find employment elsewhere.
At the end of 2010, we [were] able to demonstrate that most participants in the one-year pilot project were capable of working in gainful employment after going through a period of learning and adjustment. The patients' quality of life and their acceptance by family and community greatly improved. The success of this pilot project shows that recovering epilepsy patients are able to become productive members of the community. This should encourage the Tanzanian authorities to promote the establishment of a permanent work rehabilitation centre for recovering epilepsy patients, in connection with the Mahenge Epilepsy Clinic and the Tanzania Epilepsy Association chaired by Prof. Matuja.
Submitted on August 28, 2011 in By David.
