Author Tags: Biography, Essentials 2010, Literary Landmarks, Medicine, Physician Author
LITERARY LOCATION: Mahenge Epilepsy Clinic, Mahenge, Tanzania; south east of Singida, in the miombo woodland bio-region, Morogoro Region of Tanzania. 8° 41' 0" South, 36° 43' 0" East. 289 kilometres from Dar es Salaam.
In 1959, Tsawwassen's Louise Jilek-Aall, after gaining her diploma in tropical medicine, worked for three years as a physician in Tanganyika (now Tanzania). In the Mahenge mountains of the Ulanga district she discovered that the people of the Wapogoro tribe suffered from a convulsive disorder, called Kifafa, which had an unusual high prevalence and family incidence. Seeing the misery of these patients, Dr. Jilek-Aall founded the Mahenge Epilepsy Clinic in 1960. (In 1961, she arrived unannounced at Dr. Albert Schweitzer’s jungle hospital in Lambaréné, Gabon, and gained further inspiration.) Her clinic remains in operation.
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In 1954, as a medical student in Oslo, Louise Aall was deeply impressed by Albert Schweitzer when he came to Norway upon receiving his Nobel Peace Prize. She studied tropical medicine in Zurich and, in 1959, worked as a doctor in Tanganyika. She subsequently received the Henri Dunant Medal from the Red Cross for distinguished service with U.N. forces during the Congo civil war in 1960. In 1961, when she arrived unannounced at Schweitzer’s jungle hospital in Lambaréné, Gabon, she nervously blurted out, “I want to learn how to extract teeth.” Almost 30 years later she recalled her apprenticeship with him in her memoir, Working with Dr. Schweitzer: Sharing his Reverence for Life (1990). “In my work,” she writes, “I am keenly interested in people who are role models and who serve as ego-ideals, especially for the young; but only a very few appear to be worthwhile models.”
When she returned to work in central Tanganyika, she discovered outcasts in the Mahenge Mountains who suffered from a severe form of epilepsy. She founded the Mahenge Epilepsy Clinic in the Mahenge mountains of the Ulanga district to treat patients and educate their families, mainly from the Wapogora tribe, and was soon known far and wide as simply Mama Doctor.
These people had never received medical treatment for epilepsy and suffered greatly from frequent seizures. Nearly all of the epilepsy sufferers were feared and shunned, even by their own family members, because it was widely believed that seizures were caused by evil spirits. They sometimes died from the burns suffered when falling into domestic fires or through drowning when fetching water or fishing in the rivers.
Dr. Jilek-Aall came to realize the abnormal prevalence of epilepsy from seeing so many patients arrive at the Catholic missions dispensary for treatment of burns and other injuries suffered during seizures.
At the Mahenge Clinic, patients and their families first were given education about epilepsy and its treatment. Treatment was commenced only when full cooperation by patients and their families had been established. Due to its easy implementation and cost effectiveness, Phenobarbital was mostly prescribed. In other selected cases, Phenytoin or Primidon were used. About 200 'Kifafa' sufferers were examined and treatment initiated during the first two years of the clinic. Due to Dr. Jilek-Aall's efforts there, sufferers were no longer stigmatized or forced to live as outcasts.
Dr. Jilek-Aall has continuously improved the Mahenge Clinic and initiated research into epilepsy with teams of specialists from Austria, Germany and Tanzania. They have scientifically confirmed the existence of a unique form of epilepsy, “head nodding syndrome,” first described by Dr. Jilek-Aall in Mahenge, in the 1960s. Efforts have been undertaken to prove the likely source for "head nodding syndrome" is a parasite found in many tropical regions, Filaria worm (Onchocerca volvulus).
Also a trans-cultural psychiatrist and anthropologist, Jilek-Aall has been a member of the UBC Faculty of Medicine since 1975. She speaks Norwegian, English, German, French, Spanish, Swedish, Danish and Swahili. Her remarkable bush doctor experiences were first recalled in the book, Call Mama Doctor (1979), covering the years from 1959 to 1979. Redesigned and enlarged with new chapters, drawings and photos, Call Mama Doctor: Notes from Africa (2009) covers the years 1959 to 2009. She lives in Tsawwassen with Dr. Wolfgang G. Jilek, a fellow physician and anthropologist who she married in 1963.
Although Working with Dr. Schweitzer has been published in China, Japan and Hungary, Louise Jilek-Aall’s books are almost unknown in North America. Too busy and self-effacing to describe her life in heroic terms or to pursue any marketing, her remarkable character is even less-acknowledged that her devotion to helping others.
Working with Dr. Schweitzer (Hancock House 1990)
Call Mama Doctor, 1979 / Call Mama Doctor: Notes from Africa (Aldergrove West Pro Publishing, 2009) $24.95 978-0-9784049-2-5
Dr Louise Jilek-Aall, born 1931 in Oslo, Norway, has been a member of the Faculty of Medicine, University of British Columbia, Vancouver, Canada, since 1975. She holds the Doctorate in Medicine of the University of Zürich; the Diploma of Tropical Medicine of the Swiss Tropical Institute, Basel; the Diploma in Psychiatry of McGill University, Montréal; and the Master of Arts degree in Cultural Anthropology of the University of British Columbia, Vancouver. She is a Fellow of the Royal College of Physicians of Canada. She was in long term personal contact with her former teacher Prof. Manfred Bleuler, Zurich, and with Prof. Viktor Frankl, Vienna.
Since 1966, while making frequent consultation trips to Tanzania (formerly known as Tanganyika), Dr. Jilek-Aall has been working in psychiatric hospital and community mental health services and in private psychiatric practice in British Columbia; in the Fraser Valley, and from 1975-1995 as an active member of the Faculty of Medicine, University of British Columbia, Vancouver, teaching and supervising residents and interns in hospitals associated with the university, and as consultant at the UBC student health service, until she became Clinical professor Emerita of psychiatry in 2012.
Dr Jilek-Aall has extensive medical experience in tropical Africa since 1959, including providing assistance to Dr Albert Schweitzer at Lambaréné, Gabon. She served with the United Nations forces and the International Red Cross during the Congo civil war and received the Henri Dunant Medal and Citation of the League of Red Cross Societies for distinguished service. In 1960 she founded the Mahenge Epilepsy Clinic in the interior of Tanzania, to which she still continues to provide consultation and support.
Jilek-Aall has undertaken extensive, ongoing clinical research on epilepsy in Tanzania. She conducted the joint Canadian-Tanzanian research project on epilepsy with a grant of the International Development Research Centre, Ottawa. In the years 2003, 2005, and 2009, she continued the research on epilepsy and its causes with a team of specialists from Canada, Austria, Germany and Tanzania, at the Mahenge Epilepsy Clinic where now over thousand patients receive treatment. One of the results of this research was the confirmation by EEG and video of a separate form of epilepsy ("head nodding syndrome") which had already been described by Dr Jilek-Aall in the 1960s.
Dr Jilek-Aall is recipient of the Ambassador Award of the International League Against Epilepsy. Besides her epilepsy research, she has conducted transcultural-psychiatric investigations in East Africa, the Caribbean, South America, Southeast Asia, Papua New Guinea, and among North American indigenous and ethnic populations. As a volunteer psychiatrist she also worked in 1988 in United Nations-supervised refugee camps in Thailand.
In addition to her books, Dr. Jilek-Aall is the author or co-author of hitherto 97 articles and chapters in scientific journals and books. She held guest lectures at universities and institutes in North America, Mexico, South America, Europe, Japan, China, Thailand, and in Africa.
In 1963 Dr Louise Aall married the Austrian physician Dr Wolfgang G. Jilek, who had accompanied her to Tanzania in that year. Shortly afterwards they immigrated to Canada; working together in Canada and overseas. Dr Wolfgang G. Jilek, psychiatrist and anthropologist, has been a member of the Faculty of Medicine of the University of British Columbia since 1974; in the 1980s he rendered international service as Mental Health Consultant for the World Health Organization and the UN High Commissioner for Refugees. Their daughter Martica Ilona Jilek, R.N., is a specialized clinical nurse; from 1992 to 2009 she accompanied her mother to Tanzania to assist at the Mahenge Epilepsy Clinic and the epilepsy research teams.
[Books about and by other B.C. medical practitioners include the harrowing Chinese memoirs of Li Qunying in The Doctor Who Was Followed by Ghosts (2007) and R.E. McKechnie’s Strong Medicine: History of Healing on the Northwest Coast (1972), an attempt to cover material spanning four centuries. For other authors pertaining to medicine, see abcbookworld entries for Appleton, Paul; Beattie, B. Lynn; Billington, Keith; Blair, Geoffrey K.; Coldman, Andrew J.; Dale, John; Down, Sister Mary; Duncan, Allan; Flynn, Bethine; Frobb, Mark; Gibson, Morris; Hadley, Michael; Hannant, Larry; Haynes, Sterling; Helmcken, John Sebastian; Hister, Art; Jackson, Stewart M.; Jilek, Wolfgang G.; Kalla, Dan; Khorana, Har Gobind; Large, Richard Geddes; Lee, Eldon; Lu, Henry; Mackenzie, Roderic; Magnussen, Hazel Joan; McKechnie, R.E.; McNeill, John H.; Millar, Thomas P.; Miyazaki, M.; Monro, A.S.; Muller, Nestor; Murphy, Herbert; Newcombe, C.F.: Patterson, Frank Porter; Patterson, Kevin; Perrin, Dave; Qayumi, A.K.; Rachman, Stanley Jack; Robinson, Geoffrey; Rose, T.F.; Russell, James A.; Samwell, David; Scouler, John; Shah, Amil; Steele, Peter; Taylor, Patrick; Taylor, Steven; Tolmie, William Fraser; Tomlinson, Robert; Weisenburger, Earle; Willoughby, Charles; Zhu, Hong Zhen.]
Epilepsy Clinic and Epilepsy Research in Mahenge
An edited summary (1998)
Dr. Jilek-Aall's epilepsy clinic was maintained with the cooperation of a local Catholic mission nurse and African volunteers who were accorded regular consultative correspondence with Dr. Jilek-Aall. Initially she was only able to secure a consistent supply of medication from abroad. In 1989, the clinic was reinvigorated by the interest shown by the Tanzanian neurologist Dr. Henry Rwiza. Having completed his training in the Netherlands, Dr. Rwiza conducted an epidemiological survey of convulsive disorders in the whole of the Ulanga district. Funded from the Netherlands and conducted under the auspices of Dr. Rwiza's former teacher, epileptologist Dr. Harry Meinardi, this study confirmed Dr. Jilek-Aall's suppositions made some 30 years before. Scientific evidence confirmed that the prevalence of epilepsy in Mahenge was about ten times higher than in Western countries.
The Mahenge Epilepsy Clinic was reorganized and expanded in 1990 when Dr. Jilek-Aall revisited the area to plan a research project together with Dr. Rwiza into the ethiology and clinical characteristics of Kifafa and the reasons for the high prevalence of convulsive disorders among the Wapogoro. The research was approved and funded for three years by the International Development Research Centre (IDRC) of Canada in 1991 and carried out by a group of scientists from the University of British Columbia Canada and from the University of Dar-es Salaam Tanzania under the leadership of Dr. Jilek-Aall in cooperation with Dr. Rwiza.
The IDRC research group found many reasons for the high prevalence of epilepsy, as one finds in most tropical regions such as: malaria and other parasitic infestations, meningitis and other infections, perinatal traumas, infantile gastroenteritis and other illnesses leading to fever convulsions etc. But it was felt that these general causes could not explain the unusual high prevalence of the Kifafa affliction which often was a very severe form of epilepsy, accompanied by other neurological symptom and quite frequently by mental problems.
Nearing the close of the research project, Dr. Jilek-Aall found it striking that so many of the Kifafa sufferers showed signs of being infested with the Filaria-worm Onchocerca volvulus. She consequently learned that epidemiological research carried out by parasitologist from the University of Dar-es Salaam had shown that Mahenge mountains are the area of the heaviest infestation of onchocerca volvulus of the whole country of Tanzania. Attempts to eradicate this worm have been undertaken by the World Health Organization in many parts of Africa because this Filaria is proven to be connected to a better known malady known as "river blindness."
Since 1991 the Mahenge Epilepsy Clinic, situated in the middle of the research area, steadily accepted new patients and had a patient population of more than 900. Contrary to everybody's predictions--except Dr. Jilek-Aall's--most patients proved themselves to be reliable in getting their medication on the appointed day and taking their medication regularly, as prescribed, for years on end. Consequently the people of Mahenge have learned that the affliction of Kifafa can be controlled with western medicine. Many of the patients are accepted back into their families due to the prescriptions of Phenobarbital and Phenytoin. During several decades of operation, government agencies were not able to pay for the large amount of medicines necessary and so the clinic was largely dependant upon funds provided by Dr. Jilek-Aall and other overseas sources.
About the Mahenge Clinic
Still vibrant at age eighty, Louise Jilek-Aall is now prepared to turn over management of the Mahenge Clinic to a younger generation. A Tanzanian neurologist named Dr. Henry Rwiza “discovered” her clinic in 1989 and has confirmed the prevalence of epilepsy in Mahenge was much higher than in the rest of the surrounding Ulanga district, and more than ten times higher than what is known in western countries.
As well, a young German neurologist named Dr. Andrea Winkler who had read Louise Jilek-Aall’s articles, visited the Mahenge clinic in 2003 while Jilek-Aall was refurbishing the dilapidated clinic quarters. Encouraged by Dr. Winkler’s interest and collaboration, Jilek-Aall was able to organize another research team whose thorough investigations have led to the clear indication that most kifafa sufferers at Mahenge are infested with the parasite Onchocerca volvulus.
There is more work to be done. “We saw children and juveniles who displayed the peculiar syndrome that local people call amesinzia kitchwa, meaning ‘nodding the head,’” wrote Jilek-Aall. “It usually starts in childhood, and the local people know that the afflicted child will sooner or later develop epileptic seizures.
“I had already observed this head-nodding syndrome in children of the Mahenge region in 1960, and had verified in follow-ups that they indeed develop grand mal epilepsy. At that time I had described this syndrome in detail in scientific articles and congresses; however, my reports had met with disbelief.”
For years, Jilek-Aall was told by medical specialists working in Africa that African patients were part of their problem, because were not sufficiently self-disciplined to adopt a regime of care. “Contrary to general prediction,” she writes, “most patients have turned out to be quite reliable in taking the medication regularly as prescribed, for years on end.”
During the fifty years the Mahenge Clinic has been operating, the general attitude towards epilepsy has changed in the area. In Tanzania, sufferers of epilepsy have been called maskini, meaning “the useless ones.” They are expected to be humble and accept the poorest food and clothing, resigning themselves to subjugation and maltreatment, effectively outcasts.
International epilepsy expert Dr. Erich Schumutzhard at the Medical University of Innsbruck, fluent in Swahili, has joined Jilek-Aall’s team, providing invaluable access to funding. Schumutzhard, Winkler and Jilek-Aall met at Mahenge in 2005, along with Jilek-Aall’s daughter Martica, who caught on videotape the curious syndrome of head nodding.
Their findings have been published in prestigious scientific journals and have led to international recognition of head nodding as new epilepsy syndrome. The rudimentary Mahenge Epilepsy Clinic has throughout the years treated more than one thousand epilepsy patients and provided social support to their families. Jilek-Aall has introduced a rehabilitation program of agrarian and reforestation work for epileptic patients although these initiatives are now under threat due to lack of funding.
- Alan Twigg, 2010
Genetic Analysis of Kifafa, a Complex Familial Seizure Disorder
Rosalind J. Neuman,' Jennifer M. Kwon,' Louise Jilek-Aall,2 Henry T. Rwiza,3 John P. Rice,'
and Paul J. Goodfellow'
'Washington University School of Medicine, St. Louis; 2University of British Columbia, Vancouver; and 3Muhimbili Medical Centre,
Kifafa is the Swahili name for an epileptic seizure disorder, first reported in the early 1960s, that is prevalent in the Wapogoro tribe of the Mahenge region of Tanzania in
eastern Africa. A 1990 epidemiological survey of seizure disorders in this region reported a prevalence in the range of 19/1,i000-36/1,000, with a mean age at onset of 11.6 years; 80% of those affected had onset prior to 20 years of age. A team of investigators returned to Tanzania in 1992 and collected data on 1,600 relatives of 26 probands in 20 kifafa families. We have undertaken a genetic analysis of these data in order to detect the presence of
familial clustering and whether such aggregation could be attributed to genetic factors. Of the 127 affected individuals in these pedigrees, 23 are first-degree relatives (parent, full sibling, or offspring) of the 26 probands; 20 are second-degree relatives (half-sibling, grandparent, uncle, or aunt). When corrected for age, the risk to first-degree relatives
is .15; the risk to second-degree relatives is .063. These risks are significantly higher than would be expected if there were no familial clustering. Segregation analysis,
using PAP (rev.4.0), was undertaken to clarify the mode of inheritance. Among the Mendelian single-locus models,
an additive model was favored over either a dominant, recessive, or codominant model. The single-locus model
could be rejected when compared with the mixed Mendelian model (inclusion of a polygenic background), although
the major-gene component tends to be recessive. However, the hypothesis of Mendelian transmission could be rejected, suggesting that, although kifafa does aggregate in these families, the mode of inheritance is genetically complex. Received December 13, 1994; accepted for publication July 24, 1995.
Address for correspondence and reprints: Dr. Rosalind J. Neuman,
Department of Psychiatry, Washington University School of Medicine,
4940 Children's Place, St. Louis, MO 63110.
© 1995 by The American Society of Human Genetics. All rights reserved.
In the early 1960s, while working as a physician in a rural area of Tanzania, L. Jilek-Aall reported the existence
of a seizure disorder among the Wapogoro tribe of the Mahenge mountain region of Tanzania (Jilek-Aall 1965). This disorder, known in Swahili as kifafa (a word that denotes "being half dead and rigid" [Jilek-Aall et al. 1979]), was characterized by sudden falling into unconsciousness and convulsive movements and clinically
was categorized as a paroxysmal phenomenon of an epileptic nature. Oddly, kifafa was also characterized by burns on many parts of the body, burns usually acquired by falling into an open domestic fire because of the reluctance on the part of family members to rescue the epileptic. To understand this behavior it must be realized thatbefore the introduction of western medical knowledge an epileptic seizure was considered a catastrophe for the family (Jilek-Aall 1965). An epileptic was treated with extreme cruelty and neglect by both family and friends; epilepsy was regarded as something frightening and inexplicable,
perhaps even caused by an evil spirit. Therefore, "if an epileptic falls into the fire, nobody dares to pull him out again" (Jilek-Aall et al. 1965, p. 64). Hence burns are significant for the diagnosis of epilepsy. In conjunction with efforts of the nurses at a longstanding Catholic mission and many volunteers, the Mahenge Clinic for kifafa was established around 1960, to
provide both education and medical treatment for the seizure disorder. Clinical histories and physical examinations were performed on 200 patients, many of whom began taking moderate daily doses of phenobarbital
(Jilek-Aall et al. 1979). The success of that program in reducing seizures was attested to by the consistently
increasing numbers of patients from the area who sought treatment. "Although mortality among kifafa patients
was relatively high, the majority of those receiving antiepileptic
medication from the Mahenge Clinic remained free of attacks for extended periods, some for several years" (Jilek-Aall et al. 1979, p. 616).
A 30-year follow-up study of the Wapogoro tribe was conducted by Jilek-Aall in 1990, the outcome of which
was reported in 1992 (Jilek-Aall and Rwiza 1992). With 902 Neuman et al.: Genetic Analysis of Kifafa the help of one of the original missionary sisters, local health personnel, former epilepsy patients, village leaders, Catholic priests and nuns, and a search of the church registry, the locations of many of the clinic's kifafa patients,
first examined in the early 1960s, were traced. Of the 164 patients originally treated with antiepileptic drugs, 36 were still alive; 24 reported themselves as seizure free.
Call Mama Doctor (WestPro $24.95)
The trio of Jane Goodall, Dian Fossey and Biruté Galdikas are often described as Leakey’s Angels because all three women have pursued groundbreaking studies of primates after meeting archaeologist Louis Leakey. Louise Jilek-Aall of Tsawwassen is Albert Schweitzer’s Angel.
As a medical student in Oslo, Louise Jilek-Aall was deeply impressed when the African missionary delivered his Nobel Peace Prize speech on November 4, 1954, at Oslo University. (Schweitzer had been awarded the Nobel Prize in 1952 but his duties in Africa prevented him from appearing at the award ceremony.)
Seven years later she arrived unannounced at Schweitzer’s jungle hospital in Lambaréné, Gabon.
“And what do you want to learn from me?” he asked.
She nervously blurted out, “I want to learn to extract teeth.”
Schweitzer’s work as a physician in Africa, from 1912 to 1965, has inspired Louise Jilek-Aall ever since. Today she keeps a grass mat tapestry hanging over her kitchen table that was given to her as a parting gift by Schweitzer, also a scientist/philosopher and music scholar. His famous clinic was the subject of her second book, Working with Dr. Schweitzer: Sharing his Reverence for Life (1990).
“In my work as a psychiatrist,” she writes, “I am keenly interested in people who are role models and who serve as ego-ideals, especially for the young; but only a very few appear to be worthwhile models.”
Before meeting Schweitzer, Louise Aall worked as a bush doctor in Tanganyika/Tanzania and received the Henri Dunant Medal from the Red Cross for distinguished service with U.N. forces during the Congo civil war in 1960.
Newly revised and updated, Jilek-Aall’s first book Call Mama Doctor (WestPro $24.95) is a superb collection of remarkable stories recalling her experiences in Tanganyika/Tanzania. The stories are both harrowing and touching—because she continuously took risks beyond the confines of an established clinic.
In Tanganyika, Jilek-Aall discovered outcasts in the Mahenge Mountains who suffered from a severe form of epilepsy, prompting her to create the Mahenge Epilepsy Clinic to treat patients and educate families about epilepsy and its modern treatment. Epilepsy sufferers in Mahenge are no longer stigmatized or forced to live as outcasts.
As well as having a medical degree in tropical medicine, Dr. Louise Jilek-Aall speaks Norwegian, English, German, French, Spanish, Swedish, Danish and Suahili.
She and her husband Dr. Wolfgang G. Jilek are trans-cultural psychiatrists and anthropologists who have been members of the UBC Faculty of Medicine since 1975.
The Jilek-Aall family has continuously supported the Mahenge Clinic and initiated research into epilepsy with teams of specialists from Canada, Austria, Germany and Tanzania. They have scientifically confirmed the existence of a unique form of epilepsy (“head nodding syndrome”), first described by Dr. Aall in the 1960s.
She now works to confirm its likely source is a parasite found in many tropical regions (Filaria-worm Onchocerca volvulus).
Jilek-Aall’s fascinating stories arise from the intersection of trans-cultural psychiatry, bush doctoring, folk medicine and ground-breaking scientific research.
Although Call Mama Doctor and Working with Dr. Schweitzer were also published in China, Japan and Hungary, Jilek-Aall’s books are almost unknown in North America.
In a nutshell, her first book was produced in order to shed light on the inspirational people of Tanganyika/Tanzania, her second book sheds light on an inspirational character.
The revised version of Call Mama Doctor has been repackaged by a neophyte publishing service in Aldergrove.
Jilek-Aall has yet to write about her service with the U.N. and International Red Cross during the Congo civil war—and she has yet to write an extensive account of her main accomplishment: the Mahenge Clinic.
If the story of Dr. Jilek-Aall was ever made into a movie, it could begin when she returned to Europe from Africa determined to help solve the epilepsy problem in Mahenge. But where to start?
“Epilepsy falls between the specialties of neurology and psychiatry,” she writes. “It is a stepchild of medicine and therefore institutions for epileptics usually suffer from a lack of funds.”
After she found work as a resident psychiatrist at the Zurich University Clinic, her lone supporter was professor Manfred Bleuler, chief of psychiatry at the university clinic. He arranged for Jilek-Aall to present a briefing on her epilepsy treatment project to the man in charge of mental health initiatives at the World Health Organization’s headquarters in Geneva.
The elderly man greeted Jilek-Aall from behind his dark glasses. He challenged her credibility from the outset. He wanted to know if she was a specialist in neurology. She stammered, and desperately tried to convince him to give her even a small amount of funding.
“Well then, young lady,” he interrupted, and his voice sounded annoyed, “neither Professor Bleuler’s recommendations nor your beautiful eyes will help you in this matter. Since there appears to be some virtue in your proposals, I suggest you come back to us when you are a specialist and you have made a name for yourself.”
Initially crushed, she regained her self-confidence. “I am going to build the treatment centre for kifafa even if I do not get any help from WHO!” she decided.
Bleuler arranged for her to work at the Swiss Institute for Epileptics in Zurich. “Whenever my clinic in Tanzania ran out of funds,” she says, “I sent part of my salary to the nurse.” Bleuler also contacted pharmaceutical companies to have them donate medications and funds for Mahenge.
Then Bleuler raised another hurdle for her to consider. Louise Aall was an attractive, vibrant young woman. Did she ever wish to marry? Raise a family? He cautioned her that devoting her life to Africa might require the sacrificing of her personal life. Clearly she was at a crossroads.
In Zurich, Jilek-Aall was contacted by a professor of pharmacology for whom she had brought some medicinal herbs from Africa. It turned out that bark she had received from a medicine man at Mahenge had anti-epileptic properties, as proven in a Swiss laboratory. A decoction of the bark had been administered to test rats and had indeed reduced the induced convulsions.
If Jilek-Aall would accept funding from the pharmaceutical laboratories, would she be willing and able to return to Mahenge in order to procure one thousands pounds of this bark for conclusive analysis?
“I was speechless,” she writes. “It was as if suddenly all the patients in Africa came alive inside my head, rushing forward, laughing, crying, calling and demanding. To my surprise, my first feeling was apprehension rather than joy. Going to Africa right now? It would not be adventure any more—I knew that life too well. It was easy to dream about Africa in my comfortable apartment in Zurich—but to face all those problems again? What about my training which would have to be interrupted, and my well-paying job? I dropped my head in shame.”
Perplexed about what to do with her life, Jilek-Aall was invited by an Austrian colleague at the clinic to accompany him for an afternoon drive. They had never met outside the hospital. He wanted to take some photographs of the lake. She agreed, but with little enthusiasm. As they drove along the lake, she was absentminded, barely able to follow the conversation.
He set up his tripod. There was a marvellous view of an old castle. An amorous young couple was sitting on a bench. The Austrian proceeded to intrude upon their intimacy. The young man looked up with a frown and said something in Italian. Jilek-Aall’s Austrian colleague responded with a joke in Italian. There was laughter. All was well. The couple said they did not mind being photographed with the castle in the background. The picturesque castle glowing in the setting sun was mirrored in the calm waters.
“And as I stood at the railing,” Jilek-Aall recalls, “smiling to myself, a new awareness came over me. Never had the colours of the sky appeared so warm, the songs of the birds sounded so gay and the sight of gold-rimmed clouds filled me with such content. In my heart I recognized that it all happened because I was not alone.”
On the drive back, she began to tell her colleague about Africa, about Mahenge. Louise Aall agreed to meet with the pharmaceutical representative to discuss the logistics of the proposal. Just as she was preparing to attend this meeting, her photographer colleague caught up with her. He asked if it would be of any help if he came along to Africa? “I have some experience in neurology and psychiatry,” he said.
Louise Aall looked at this man with blank astonishment. It took her a moment to rearrange her thoughts. “Slowly a feeling of great relief spread through me,” she recalls. “I would not have to go back to Africa alone.” She realized she wanted to go to Africa with this man—and she still didn’t even know his first name.
In 1963, Wolfgang Jilek—her Austrian colleague with the camera—and Louise Jilek-Aall came to Canada to at-
tend McGill University to specialize in “trans-cultural” psychiatry. They mostly wanted to expand their horizons as doctors but the Canadian consulate advised them to arrive as immigrants.
Driving across Canada for a holiday, the couple was taken aback by the beauty of British Columbia. They discovered they could get positions at UBC, but only if they agreed to first work in an area that lacked psychiatrists. So they worked and thrived in the Fraser Valley, based in Chilliwack, from 1966 onward.
Relocation brought them into contact with members of different ethnic groups—specifically the Mennonites, Dutch Reformed Church members, Doukhobors and First Nations. As trans-cultural specialists, they were able to publish papers germane to their field of expertise.
Increasingly the couple provided psychiatric consultation to indigenous populations in the Fraser Valley and on the Pacific Northwest coast. Friendly visitors to their home have included the French anthropologist Claude Lévi-Strauss, Chief Jimmy Sewid of Alert Bay, Haida artist Bill Reid, Seshaht artist George Clutesi and the UBC anthropologist Wilson Duff.
They both received masters degrees in anthropology from UBC. In 1970, Wolfgang Jilek founded the Canadian Psychiatric Association’s Section on Native Peoples’ Mental Health. His books include Salish Indian Mental Health and Culture Change: Psychohygienic and Therapeutic Aspects of the Guardian Spirit Ceremonial (1974) and a bestseller called Indian Healing: Shamanic Ceremonialism in the Pacific Northwest Today (1982).
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Still vibrant at age eighty, Louise Jilek-Aall is now prepared to turn over management of the Mahenge Clinic to a younger generation. The rudimentary clinic has treated more than one thousand epilepsy patients and provided social support to their families, mostly from the Wapogoro tribe. To learn more, or to provide support, visit www.MahengeEpilepsy.com or see the entry for Louise Jilek-Aall at www.abcbookworld.com. Her new book Call Mama Doctor: Notes from Africa is from Aldergrove West Pro Publishing.
Fifty Years Epilepsy Clinic and Research in Mahenge, Tanzania
Summarizing Report (2010)
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.