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.

QUICK REFERENCE ENTRY:

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.

BOOKS:

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

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A MINI-BIOGRAPHY

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.]

[BCBW 2016]