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Summary of Dr. Louise Jilek-Aall's Epilepsy Clinic and Epilepsy Research in Mahenge, Tanzania East-Africa


November 12, 1998

In 1959, the author, 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 nurs 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. During the 36 years the clinic has been operating the general attitude towards epilepsy has improved considerably and many of the well controlled patients have been accepted back into their families and are able to live a close to normal life even though Phenobarbital and Phenytoin are the only medications available to them.

The Government Hospital of Mahenge has provided a psychiatric nurse and a social worker to handle the large number of Kifafa sufferers, but the Government agencies are not able to pay for the large amount of medicines necessary and the clinic is dependant upon funds provided for by Dr. Jilek-Aall and other overseas resources she can muster.

The 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.

Just at the time when the research was drawing to its end, 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 found out 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. Eradication of this worm has been carried out by WHO in many parts of Africa, not because of the possible connection with epilepsy, (which we from the Mahenge research suspect), but because of the better known "river blindness" caused by this Filaria.

We believe that it would be of outmost importance to people in Africa and other tropical countries where the filaria onchocerca volvulus is endemic, to conduct research into what possible brain damage could be caused by it and therefore provoke epilepsy in predisposed people.

If funding would be available, the Mahenge research team would take up this challenging investigation, knowing that if the connection between onchocerca volvulus and epilepsy is proven, preventive and therapeutic measures would be taken also in other filaria infested areas and much suffering could thereby be prevented.

I, the author, would like to personally appeal to the readers of my two books presented here, Working with Dr. Schweitzer and Call Mama Doctor to support the maintenance of the Mahenge Epilepsy Clinic and a further research into the possible connection between epilepsy and onchocerciasis by a monetary donation of any amount. Please contact me personally at the following address:

Dr. L. Jilek-Aall
571 English Bluff Road
Delta, B.C. V4M 2M9
CANADA

or through my e-mail address: mjilek@axionet.com.

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