Dr. Louise Jilek-Aall and the roots of Provision Charitable Foundation
In 1959 Louise Jilek-Aall, after having taken a diploma in tropical medicine, worked for three years as a physician in 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. This people had never received medical treatment for epilepsy and suffered greatly from frequent seizures. Believing that the Kifafa was caused by evil spirits, the epilepsy sufferers were feared and shunned, even by their own family members. Some came to the Catholic missions dispensary-not for their epilepsy, but because of burns and other injuries suffered during seizures. They faced severe discrimination and neglect among their own people and led a miserable life in humiliation and fear; they were malnourished and often perished from burns when falling into the domestic fire or through drowning when fetching water or fishing in the river, or simply from marasmus and intercurrent diseases.
Seeing the incredible misery of these patients, Dr. Jilek-Aall in 1960 founded the "Mahenge Epilepsy Clinic". Patients and their families received education about epilepsy and its treatment and only when full cooperation by patients and their families had been established was treatment begun. Because of its easy implementation and cost effectiveness, only Phenobarbital and in selected cases, Phenytoin or Primidon was used. About 200 Kifafa sufferers were examined and treatment initiated during the first two years of the clinic. When Dr. Jilek-Aall had to leave the clinic was kept alive by the local Catholic mission nuns and African volunteers with regular consultative correspondence with Dr. Jilek-Aall who was able to secure regular medication supply from abroad. The clinic functioned in spite of some periods of irregular medication supply until 1989 when the clinic was " rediscovered " by the Tanzanian neurologist Dr. Henry Rwiza who had just finished his specialist training in neurology in the Netherlands. Dr. Rwiza then conducted an epidemiological survey of convulsive disorders in the whole of the Ulanga district in which Mahenge is situated. The survey ,with funds from the Netherlands and under the auspice of the famous epileptologist and his former teacher Dr. Harry Meinardi, confirmed what Dr. Jilek-Aall had stated some 30 years earlier. That the prevalence of epilepsy in Mahenge was about ten times higher than what is known from 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.
Since 1991 the Mahenge Epilepsy Clinic, situated in the middle of the research area has steadily accepted new patients and has grown into a patient population of more than 900. Contrary to everybody's prediction, most patients have turned out to be quite reliable in getting their medication on the appointed day and are taking the medication regularly and as prescribed for years on end. Their compliance and the encouragement of the family is only possible through the continued education regarding epilepsy by the nurse and the volunteer workers. People of Mahenge have now increasingly experienced how the terrifying affliction of Kifafa can be controlled with western medicine.
Provision Charitable Foundation begins
In 2009 Ken and Nancy Morrison, inspired by Dr. Louise's dedication, traveled to Tanzania with Dr. Louise and her daughter Martica. After visiting the clinic and the epileptic patients it was decided that the next stage of education is to show that treated people with epilepsy can successfully be employed.
Ten treated epileptic patients were employed to be involved in vegetable gardening and reforestation. The standard of living, the status in the community and the self esteem of the people improved dramatically.
In 2011 Ken and Nancy Morrison traveled to Tanzania for a second time to review results of the first two years of the employment program and to discuss other needs that could be addressed. Education becomes a clear focus and two university students were supported.
In 2012 Provision Charitable Foundation was incorporated and registered as a Canadian charity.
The continued need for education in the Kilombero Valley was becoming more apparent and four medical students were sponsored at St Francis University in Ifakara,
In 2013 that number increased to nine students.
In 2014 Julianna Schinnick, partnered with Provision Charitable Foundation.
Julianna brought her experience as a person living with epilepsy and her education background in Neurology.
Julianna spent 3 months in Mahenge building water wells to make irrigation and clean water accessible. As the recipient of the Davis 100 Projects for Peace grant, she used the funds to start several vocational and educational projects for people with epilepsy in Mahenge. These projects aimed to provide opportunities for people with epilepsy to work independently. She started programs teaching tailoring, carpentry and candle-making. These projects have seen several graduates and the training programs continue today with Julianna regularly visiting Tanzania to monitor their progress.
In 2015 Maureen Knorr brought her experience to the Provision group. Maureen is a person living with epilepsy and has a heart for seeing the lives of the epileptic people in Mahenge improved.
Maureen visited Mahenge, built relationships with both the people living with epilepsy in the area, and the catholic priests that are integrally involved in the patients lives.
Maureen discovered that people in the community still had many mistaken beliefs about epilepsy and has focused on continued educational awareness of epilepsy.
Today Provision Charitable Foundation continues to improve the lives of those living with epilepsy and their communities.