Epilepsy

For several years Father Placid served as the primary overseer for an important rehabilitation project to employ epilepsy sufferers in the Mahenge region. He has instructed and supervised their farming in keeping with a program devised by Dr. Louise Jilek-Aall, a Canadian physician who pioneered an unprecedented treatment program for epileptics in East Africa. The recovering workers are paid by the Provision Foundation, a charity based in Richmond, British Columbia, Canada, near where Dr. Jilek-Aall resides in Delta, British Columbia.

Plans are now in place for Father Placid to revitalize and expand the epilepsy employment program. “I solemnly tell you these plans are going to happen,” he says. “Epilepsy is not something to be feared. Epilepsy can be treated. Epileptic people should be treated equally in our society. They can go to school and do all the jobs others are doing.”

The recovering workers are paid by the Provision Foundation, a charity based in Richmond, British Columbia, Canada, near where Dr. Jilek-Aall resides in Delta, British Columbia.


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Other Catholic priests such as Rev. Achilleus Ndege (relocated to Ifakara), Rev. Filbert Mhasi (Kasita Seminary) and Father Charles Kaundika (Kasita Seminary) have also proved themselves invaluable over the years, but it is Father Placid who has the most knowledge and aptitude for managing agriculture and livestock. He is also well-loved by the workers, most of whom were deeply troubled when they learned he was to be relocated to Luhombero.

Father Placid hopes to remain an integral part of the rehabilitation project that affords independence and dignity for those who suffer from epilepsy. These are people who would otherwise be treated as outcasts in their own community.

Dr. Louise Jilek-AallLouise Aall was born in Oslo, Norway in 1931. In 1959, after gaining diplomas in medicine and in tropical medicine, she went to Africa and worked for three years as a physician in Tanganyika (now Tanzania) and the Belgian Congo during the worst of the Belgian Congo civil war. In the Mahenge mountains of the Ulanga district of Tanganyika she discovered that the people of the Wapogoro tribe suffered from a convulsive disorder, called kifafa in Swahili, a form of epilepsy.

There was a drastically high prevalence of epilepsy within this population. Seeing the misery of these patients, Dr. Aall founded the Mahenge Epilepsy Clinic in 1960. It has remained in operation ever since. [In 1963 Dr. Louise Aall married the Austrian physician Dr Wolfgang G. Jilek, who had accompanied her to Tanzania in that year, and she adopted the marital surname Jilek-Aall.]

As a student in Oslo, Louise Aall was inspired by Albert Schweitzer’s visit to Norway when he received his Nobel Peace Prize and he delivered a speech in the auditorium of Oslo University on November 4, 1954. After she gained her medical degree in Zurich, she studied tropical medicine in Basel.


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This led her to conduct a research project in Africa in 1959, working as a doctor in Tanganyika. She subsequently received the Henri Dunant Medal from the Red Cross for her distinguished service as volunteer doctor affiliated with the United Nations during the horrific Congo civil war in 1960. She was asked by the Red Cross to go to the war-torn region after the Belgian physicians had suddenly fled the country.

Louise Jilek-Aall in Lambarene

After her grueling service as a Red Cross doctor in the hottest part of the Congo, Louise Aall worked with Albert Schweitzer at his Lambaréné hospital in what is now Gabon.

After an improvised departure from the Congo on a freighter (after she had been airlifted onto the deck of the freighter by a helicopter, much to the surprise of the freighter’s captain and crew), she decided to travel up the Gabon River and visit Dr. Albert Schweitzer’s jungle hospital in Lambaréné, Gabon.

“And what can I do for you,” Dr. Schweitzer asked the young lady. She nervously blurted out, “I want to learn how to extract teeth in the jungle.” He was very impressed that she was already a bush doctor and asked her to stay. She was exhausted after being one of the few physicians in a 300-bed hospital in a remote part of the Congo–and she later recognizes she likely had PTSD–but she consented to his request.

For the better part of a year Dr. Aall remained with Schweitzer, befriending him and learning jungle medicine.

Almost 30 years later she recalled her apprenticeship 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.”

Upon her return to work in central Tanganyika, she further clarified that outcasts in the Mahenge Mountains suffered from a severe form of epilepsy. Consequently she founded a makeshift clinic in the Ulanga district to specifically treat epilepsy patients and to educate their families about the disease. For much of the time she never heard her own name. She was known instead, far and wide, as Mama Doctor.

Initially the patients she saw were mostly from the Wapogoro tribe. They had hardly ever 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, as it was believed that seizures were mostly caused by evil spirits as punishments for uncivil behaviour.

Frequently these kifafa sufferers died from the burns suffered when falling into domestic fires or through drowning when fetching water or fishing in the rivers.


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Seeing so many patients arrive at the Catholic mission dispensaries for treatment of burns and other injuries suffered during their seizures caused Dr. Aall to recognize there was an abnormally high prevalence of epilepsy in the region.

“In the Western world of today,” she has written, “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, often with post-ictal confusion and fugue states.

As I observed in Mahenge, they may die in status epilepticus, or develop severe depression and psychotic states with Parkinsonian symptoms.”

Mahenge-first-epilepsy-patients-1960

Mahenge clinic’s first epilepsy patients, 1960

At the Mahenge Clinic, patients and their families first were given education about epilepsy and its treatment. Treatment was commenced only after full cooperation by patients and their families had been established. During her early career, Dr. Jilek-Aall was repeatedly told by other medical authorities that her patients would never have the self-discipline necessary to adapt to a regimen of medication; she proved them wrong.

Due to easy implementation and cost effectiveness, Phenobarbital was mostly prescribed. In other selected cases, Phenytoin or Primidon were used. About 200 kifafa patients were examined and treated during the first two years of the clinic. Gradually, due to Dr. Aall’s efforts, epilepsy sufferers were less stigmatized and they were not invariably forced to live as outcasts.

In 1972 the epilepsy clinic 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 for by the Tanzanian Government, as in other public hospitals.

The Government was not always able to supply sufficient antiepileptic medication so, from time to time, donations were made by Dr. Jilek-Aall and other Canadian donors she could find. The Mental Health Centre was inundated with epilepsy patients while the number of purely psychiatric patients remained minimal.

Dr. Jilek-Aall has continuously worked to improve the Mahenge Epilepsy Clinic and initiated research into epilepsy with teams of specialists from Canada, Austria, Germany and Tanzania. These specialists have scientifically confirmed the existence of a unique form of epilepsy, “head nodding syndrome,” first described by Dr. Jilek-Aall in the 1960s. Efforts have been undertaken to prove the likely source for “head nodding syndrome” is a parasite which is found in many tropical regions, Filaria worm (Onchocerca volvulus).

Mahenge-patients-receive-monthly-supply-meds-2005

Mahenge patients receive their monthly supplies of medication, 2005, administered by the Tanzanian government

Also a trans-cultural psychiatrist and anthropologist, Dr. 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 “bush doctor” experiences were first recalled in the book, Call Mama Doctor (1979), covering the years from 1959 to 1979. It was redesigned and enlarged with new chapters, drawings and photos, and released as Call Mama Doctor: Notes from Africa (2009) covering the years 1959 to 2009. Working with Dr. Schweitzer has been published in China, Japan and Hungary but Dr. Jilek-Aall’s books are almost unknown in North America.

Wolfgang Jilek

Wolfgang Jilek

Too self-effacing to describe her life in heroic terms, as well as disinclined to pursue any marketing, Dr. Louise Jilek-Aall lives with her husband, Dr. Wolfgang G. Jilek, in Tsawwassen. Due to her age, she is no longer able to fly to Africa but she remains intensely involved in maintaining the effectiveness of the Mahenge Epilepsy Clinic.


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BOOKS:

Call Mama Doctor: African notes of young woman doctor , 1979 0-88839-025-4

Working with Dr. Schweitzer: Sharing his Reverence for Life (Hancock House 1990) 0-88839-209-5

Call Mama Doctor: Notes from Africa (Aldergrove West Pro Publishing, 2009) $24.95 978-0-9784049-2-5

This text has used by permission from the BCBookLook reference site–also written by Alan Twigg. To read the full article, click here.