L Jilek-Aall

Oregon Health and Science University, Portland, Oregon, United States

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Publications (17)40.19 Total impact

  • Ps Spencer, Vs Palmer, L Jilek-Aall
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    ABSTRACT: Repetitive involuntary head nodding was first reported in the 1960s in the Wapogoro tribe of Tanzania. We describe the natural history of head nodding in the Wapogoro tribe, with special reference to the earliest reported dates of onset. We analyzed clinical data from 150 historical patients seen between 1960 and 1971. Head nodding with or without grand mal convulsions was present in 33/150 (∼20%) cases, was mostly familial and equally distributed by gender. Age at onset of head nodding ranged from 2-22 years (mean: ∼10 years) in the period 1934-1962. Head nodding preceded onset of grand mal convulsions by up to 12 months, and motor and psychomotor deficits indicative of brain damage developed with time. Fourteen of the 33 cases died at 13-39 years of age (mean: ∼20 years) while nineteen aged 16-28 years (mean: ∼16 years) were still alive. Historical accounts of head nodding (amesinzia kichwa, Swahili) among the Wapogoro tribe fit the August 2012 World Health Organization (WHO) case definition of probable Nodding Syndrome. Reported to have existed in this population for at least 80 years, Nodding Syndrome is a progressive seizure disorder that leads to generalized convulsions (kifafa), brain damage and death.
    African health sciences 06/2013; 13(2):176-82.
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    ABSTRACT: Onchocerciasis has been implicated in the pathogenesis of epilepsy. The debate on a potential causal relationship between Onchocerca volvulus and epilepsy has taken a new direction in the light of the most recent epidemic of nodding syndrome. To document MRI changes in people with different types of epilepsy and investigate whether there is an association with O. volvulus infection. In a prospective study in southern Tanzania, an area endemic for O. volvulus with a high prevalence of epilepsy and nodding syndrome, we performed MRI on 32 people with epilepsy, 12 of which suffered from nodding syndrome. Polymerase chain reaction (PCR) of O. volvulus was performed in skin and CSF. The most frequent abnormalities seen on MRI was atrophy (twelve patients (37.5%)) followed by intraparenchymal pathologies such as changes in the hippocampus (nine patients (28.1%)), gliotic lesions (six patients (18.8%)) and subcortical signal abnormalities (three patients (9.4%)). There was an overall trend towards an association of intraparenchymal cerebral pathologies and infection with O. volvulus based on skin PCR (Fisher's Exact Test p=0.067) which was most pronounced in children and adolescents with nodding syndrome compared to those with other types of epilepsy (Fisher's Exact Test, p=0.083). Contrary to skin PCR results, PCR of CSF was negative in all patients. The observed trend towards an association of intraparenchymal cerebral pathological results on MRI and a positive skin PCR for O. volvulus despite negative PCR of CSF is intriguing and deserves further attention.
    African health sciences 06/2013; 13(2):529-40.
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    Spencer, P.S., Palmer, V.S., L. Jilek-Aall
    African Health Sciences 01/2013; 13:176-82.. · 0.50 Impact Factor
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    ABSTRACT: The social stigma toward people with epilepsy (PWE) varies greatly between cultures. In this study, 167 people (59 PWE, 62 relatives, 46 villagers) in a rural area of northern Tanzania were interviewed at the hospital and in the community regarding their prevailing beliefs about epilepsy and attitudes toward PWE. Seventy-eight of those interviewed (46.7%) thought that epilepsy was due to supernatural causes, but 86 (51.5%) assumed that epilepsy is caused by brain disorders or is inherited. According to the interviewees, epilepsy impacts on the lives of affected people. 65.3% (n=109) thought that PWE should not attend school or go to work and 38.3% (n=64) were of the opinion that PWE had decreased chances of getting married. A minority (11.4%; n=19) thought that epilepsy was a reason not to have children. In summary, supernatural and more scientific ideas about the causes of epilepsy seem to coexist. Nevertheless, there is considerable stigma toward PWE, which needs to be interpreted within the sociocultural context of the study.
    Epilepsy & Behavior 10/2010; 19(4):596-601. · 1.84 Impact Factor
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    ABSTRACT: We have previously described a seizure disorder characterized by head nodding (HN). In a prospective study in southern Tanzania, we evaluated 62 patients with HN. Here, we report the patients' clinical characteristics and those of their seizures, which indicate high seizure frequency, unsatisfactory seizure control, a high burden of cognitive impairment and disease-associated barriers to education.
    Tropical Doctor 07/2010; 40(3):173-5. · 0.61 Impact Factor
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    ABSTRACT: Several reports indicate high prevalences of both onchocerciasis and epilepsy in some regions of Africa. This raises the question of whether these diseases are associated. We therefore investigated people with epilepsy and/or onchocerciasis living in an area in Tanzania endemic for Onchocerca volvulus (O. volvulus). We collected clinical information, skin snips, and blood from 300 individuals, and cerebrospinal fluid (CSF) from 197. Participants were allocated to 4 groups consisting of people with epilepsy and onchocerciasis (n=135), those with either epilepsy (n=61) or onchocerciasis only (n=35), and healthy individuals (n=69). Samples were evaluated for microfilaria, IgG4 antibodies against O. volvulus, O. volvulus antibody index (CSF/serum), and CSF routine parameters. Polymerase chain reaction (PCR) was performed on skin snips and CSF. No difference was found in microfilarial density between participants with and without epilepsy (P=0.498). The antibody index was raised in 2 participants. CSF PCR was negative in all samples tested. Our results do not give evidence of a relationship between O. volvulus and epilepsy. Despite the fact that 2 participants had raised antibody index, the existence of cerebral onchocerciasis caused by migration of microfilariae into the CSF appears unlikely. However, to date unexplored reactions to the infestation with O. volvulus causing epilepsy cannot be excluded.
    Parasitology 04/2010; 137(10):1559-68. · 2.36 Impact Factor
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    ABSTRACT: Most people with epilepsy (PWE) live in developing countries with limited access to health care facilities. In sub-Saharan Africa with approximately 12 million PWE, 90% do not receive adequate medical treatment. In this context, traditional medicine, being easily accessible, plays an important role. However, in sub- Saharan Africa, studies on the attitude of people (both affected and not affected by epilepsy) towards traditional medicine for treatment of epilepsy are scarce. In this study, 167 people (59 PWE, 62 relatives, 46 villagers) were interviewed at the hospital and in the community with a semi-structured validated questionnaire regarding the prevailing attitude towards traditional medicine for treatment of epilepsy in a rural area of northern Tanzania. Various traditional healing methods (THM) could be ascertained, i.e. traditional herbal medicine, spiritual healing, scarifications and spitting. 44.3% (n=74/167) of the interviewed people were convinced that epilepsy could be treated successfully with THM. Interestingly, 34.1% (n=57/167) thought that Christian prayers could cure the cause and/or treat symptoms of epilepsy. Significantly more PWE and their relatives were in favour of THM compared to villagers not knowing about epilepsy or not being immediately affected by epilepsy (χ(2)-test, p=0.004). Further factors influencing people's attitudes towards THM were gender, tribe, religion and urbanity of people's dwellings. Our study demonstrates that not only THM but also prayers in the Christian sense seem to play an important role in people's beliefs regarding successful treatment of epilepsy. Factors influencing this belief system have been identified and are discussed.
    African Journal of Traditional, Complementary and Alternative Medicines 01/2009; 7(2):162-70. · 0.52 Impact Factor
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    ABSTRACT: In the 1960s in Tanzania, L. Jilek-Aall observed a seizure disorder characterized by head nodding (HN). Decades later, "nodding disease," reminiscent of what was seen in Tanzania, was reported from Sudan. To date this seizure disorder has not been classified and possible causes still remain obscure. In a prospective study in southern Tanzania, we evaluated 62 patients with HN. Selected patients underwent blood (n = 51) and cerebrospinal fluid (CSF) (n = 48) analyses. Others were chosen for MRI (n = 12) and EEG (n = 10). Seizure type was classified as "head nodding only" and "head nodding plus," the latter being combined with other types of seizure (n =34). During HN, consciousness was impaired in 11 patients (17.7%) and supportive signs of epileptic seizures were described by 15 (24.2%) patients. Precipitating factors were confirmed by 11 (17.7%) patients. Fifty-six (90.3%) patients had at least one relative with epilepsy. EEG confirmed interictal epileptic activity in two patients and unspecific changes in four patients. MRI showed hippocampus pathologies (n = 5) and gliotic changes (n = 5). Skin polymerase chain reaction (PCR) positivity for Onchocerca volvulus was significantly associated with lesions on MRI. However, PCR of the CSF was negative in all cases. We present a comprehensive clinical description of the "HN syndrome," possibly a new epilepsy disorder in sub-Saharan Africa. MRI lesions and their association with positive skin PCR for O. volvulus despite negative PCR of the CSF is intriguing and deserves attention. Furthermore, the high prevalence of hippocampus sclerosis and familial clustering of epilepsy may point toward other potential pathogenetic mechanisms.
    Epilepsia 06/2008; 49(12):2008-15. · 3.96 Impact Factor
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    ABSTRACT: The high prevalence of epilepsy detected in rural Tanzania by Dr. Jilek-Aall since 1960, was verified by the World Health Organization (WHO) survey on neurological and seizure disorders. Neurologists and psychiatrists further interviewed both patients and controls using standard methods. The presence of possible risk factors was complemented by corroborative evidence through interviewing close relatives and scrutinizing medical records. Seizures were classified based on clinical symptoms and the use of EEG. A family history of epilepsy in first-degree relatives was found in 46.6% of patients, but in only 19.6% of controls. The odds ratio for family history with epilepsy was 3.52 (95% confidence interval, CI 2.4-5.74, p < 0.001). A past history of febrile convulsion was found in 44% of patients in comparison to 23% of the control group which was significant (odds ratio 2.4, 95% CI 1.5-3.8; p < 0.001). A history of intrapartum complications was found in 12.1% of patients and 1.8% of controls (odds ratio 7.3, 95% CI 2.5-25.2; p < 0.002). Head injury was not a significant risk factor for epilepsy in this rural community. The results indicated a strongly independent association between four factors and the risk of developing epilepsy. It would seem more likely that previous brain insults/diseases play a significant major role in the cause of epilepsy in the Mahenge area. However, a genetic predisposition to low threshold for convulsions cannot be excluded.
    Neuroepidemiology 10/2001; 20(4):242-7. · 2.37 Impact Factor
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    L Jilek-Aall
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    ABSTRACT: Epilepsy when manifested as grand mal seizure provokes strong and ambivalent feelings in those witnessing it. Terms such as morbus sacer, denoting both a sacred and demoniac condition, or folk names indicating divine punishment, have expressed these feelings in European societies from antiquity to the Middle Ages and beyond. An atmosphere of fear, shame and mysticism surrounds epilepsy even in our days in many non-Western and also in Western cultures. In the course of work and studies in Tanzania, where I organized the Mahenge Clinic for Epilepsy in 1960, and in other parts of Africa, I found that epilepsy is conceived of as an "African'' affliction, a manifestation of supernatural forces that makes it difficult to reach epilepsy sufferers with modern medical treatment. Epilepsy is traditionally looked on as caused by ancestral spirits or attributed to possession by evil spirits. It is also thought to be due to witchcraft, and "poisoning," and often taken to be contagious. Epilepsy may, under Christian missionary teaching, have come to be considered as due to demoniac possession or divine punishment for sins, in accordance with biblical examples. In many parts of Africa, syncretic amalgamation of indigenous traditions with Judeo-Christian doctrines influenced popular attitudes toward epilepsy. We demonstrated that persistent efforts at health education in the context of organized treatment of epilepsy can result in a change of popular notions about epilepsy and consequently lead to significant improvement in the quality of life of epilepsy sufferers.
    Epilepsia 04/1999; 40(3):382-6. · 3.91 Impact Factor
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    ABSTRACT: As documented by many authors, the social position of epileptics in many small scale societies of Africa is marginal at best, and is often characterized by rejection, discrimination, even ostracism. Such negative and noxious attitudes toward persons suffering from epilepsy are rooted in traditional beliefs about causes and nature of convulsive disorders and these have parallels in European history. This article focuses on the psychosociocultural aspects and indigenous concepts of epilepsy, on popular attitudes towards, and social status of, sufferers from epilepsy in a Tanzanian tribal population. The authors present a comparative analysis of focus group discussions conducted with epileptics and with matched controls in two isolated communities. In one community (Mahenge) a clinic for epilepsy has been operating for over 36 years, with a public education component during the last four years, whereas in the other community (Ruaha) epileptics have only been sporadically treated in a small mission dispensary and people have had little opportunity to learn about the nature and modern treatment of convulsive disorders. The responses obtained in focus group discussions reflect the significant change in notions about the illness, in the attitude toward and in the social status of epileptics in Mahenge, while the people of Ruaha still regard epilepsy as a typical "African" affliction fraught with supernatural danger and not effectively treatable by modern medicine.
    Social Science [?] Medicine 10/1997; 45(5):783-95. · 2.73 Impact Factor
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    ABSTRACT: 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 19/1,000-36/1,000, 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.(ABSTRACT TRUNCATED AT 250 WORDS)
    The American Journal of Human Genetics 10/1995; 57(4):902-10. · 11.20 Impact Factor
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    ABSTRACT: Before a health education program can be established, one must first know what the target population believes and does with respect to the disease in question. Therefore, we performed a study among Tanzanian rural inhabitants to identify their knowledge, attitude, and practice (KAP) toward epilepsy: 3,256 heads of households (mean age 40.2 years, range 15-90 years; M/F ratio 1:1) were interviewed. Of the respondents, 32.9% said they had never seen a seizure; 67.7% said they did not know the cause of epilepsy; 33.3% mentioned various causes including heredity, witchcraft, infection of the spinal cord, hernia; 40.6% believed epilepsy was infectious through physical contact, flatus, breath, excretions, sharing food; 36.8% believed epilepsy could not be cured and 17.1% believed it could not even be controlled; 45.3% believed epilepsy could be treated by traditional healers, and only 50.8% believed hospital drugs were of any use; and 62.7% of the respondents would not allow an epileptic child to go to school for various reasons, including mental subnormality (54.0%), fear of the child falling while alone (65.9%), and fear that the epileptic child would infect other children (11.2%). Concerning what is to be done when a seizure occurs, 33.5% of the respondents would keep away and not touch the person; 16.5% would take some potentially harmful measure such as forcing a mouth gag or forcing a drink such as water (1 even mentioned urine); 5.2% would take unnecessary measures such as rushing the patient to a hospital. Only 35.7% of respondents would perform at least some of the currently recommended first-aid measures.(ABSTRACT TRUNCATED AT 250 WORDS)
    Epilepsia 01/1993; 34(6):1017-23. · 3.91 Impact Factor
  • L Jilek-Aall, H T Rwiza
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    ABSTRACT: While working as a physician in Tanzania in the early 1960s, Dr. Louise Jilek-Aall founded an outpatient clinic for epilepsy among the Pogoro people of Mahenge mountains where epilepsy (locally termed Kifafa) had brought misery and death to an unusually high percentage of the population. With local assistance and overseas donations of phenobarbital (PB), this clinic treated approximately 200 patients for less than or equal to 10 years. The area was revisited 30 years later to trace these patients. Of the 164 patients who had started treatment, 86 (52.4%) achieved complete seizure suppression, 59 (36.0%) experienced reduction in seizure frequency, 13 (7.9%) experienced no change, and in 1 (0.6%) seizures were worse. The effect of treatment could not be assessed in 5 (3.0%) patients. After 30 years, only 36 (21.9%) of the 164 patients were known to be alive. Of the patients, 110 (67.1%) had died, and the whereabouts of 18 (11%) could not be traced. The causes of death were epilepsy related (status epilepticus, drowning, burns, dying in or after a seizure) in greater than 50% of the patients. Epilepsy-related deaths were proportionately higher after drug supply was stopped and among patients who were receiving drugs irregularly or who had only partial seizure control. Patients with epilepsy showed an increased mortality rate, which was twice that of the general rural Tanzanian population of similar age. Management of epilepsy in rural Africans should also emphasize methods to prevent epilepsy-related causes of death among patients with epilepsy.
    Epilepsia 01/1992; 33(4):645-50. · 3.91 Impact Factor
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    ABSTRACT: Background and Methods: The high prevalence of epilepsy detected in rural Tanzania by Dr. Jilek-Aall since 1960, was verified by the World Health Organization (WHO) survey on neurological and seizure disorders. Neurologists and psychiatrists further interviewed both patients and controls using standard methods. The presence of possible risk factors was complemented by corroborative evidence through interviewing close relatives and scrutinizing medical records. Seizures were classified based on clinical symptoms and the use of EEG. Results: A family history of epilepsy in first-degree relatives was found in 46.6% of patients, but in only 19.6% of controls. The odds ratio for family history with epilepsy was 3.52 (95% confidence interval, CI 2.4–5.74, p < 0.001). A past history of febrile convulsion was found in 44% of patients in comparison to 23% of the control group which was significant (odds ratio 2.4, 95% CI 1.5–3.8; p < 0.001). A history of intrapartum complications was found in 12.1% of patients and 1.8% of controls (odds ratio 7.3, 95% CI 2.5–25.2; p < 0.002). Head injury was not a significant risk factor for epilepsy in this rural community. Conclusion: The results indicated a strongly independent association between four factors and the risk of developing epilepsy. It would seem more likely that previous brain insults/diseases play a significant major role in the cause of epilepsy in the Mahenge area. However, a genetic predisposition to low threshold for convulsions cannot be excluded.
    Neuroepidemiology 20(4):242-247. · 2.37 Impact Factor
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    Salud, Louise Jilek-Aall
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    ABSTRACT: INTRODUCTION: OWN OBSERVATIONS IN EAST AFRICA While working as physician in the interior of Tanganyika, now Tanzania, East Africa, in the early 1960s, I found an unusual number of patients in the Mahenge mountains of Ulanga District presenting with burns and other injuries contracted during convulsive seizures. In rural Africa, epilepsy is believed to be contagious and caused by witchcraft or evil spirits. Most people are therefore afraid of touching an epileptic person during a seizure. Hence, epileptic persons unfortunate enough to fall into the open domestic fire, are liable to burn themselves without being helped. The epilepsy sufferers are feared and even despised, suffering from terri-ble burns, often malnourished and depressed, easily succumbing to intercurrent illnesses or dying from their wounds, from drowning, or status epilepticus.When I founded an outpatient clinic for epilepsy in Mahenge in 1960, ABSTRACT The objective of this paper is to acknowledge the pioneering Mexican research, conducted decades ago on the relationship of Onchocerca filariasis with epilepsy, in the light of recent investigations. The author has 40 years of experience with seizure disorder in East Africa in an area of high epilepsy prevalence and hyperendemicity of onchocerciasis. She reported unusual neurological and endocrine symptoms in epileptic patients and hypothesized a causal linkage between onchocerciasis and epilepsy, which encountered scepticism. Eventually she found the report by Casis Sacre on his work in Chiapas and Oaxaca in the 1930s. The "epileptic syndrome" he described as associated with onchocerciasis closely resembled her own observations. His conclusion of a causal relationship was ignored inspite of supportive findings by Mazzotti, another Mexican investigator. Research teams in Africa recently again focused on this issue; the majority confirmed the much earlier conclusions of the Mexican pioneers, without giving them credit.
  • Louise Jilek-Aall
    Social Science & Medicine. 24(11):993–994.

Publication Stats

264 Citations
40.19 Total Impact Points

Institutions

  • 2013
    • Oregon Health and Science University
      • Department of Neurology
      Portland, Oregon, United States
  • 1992–2010
    • University of British Columbia - Vancouver
      • Department of Psychiatry
      Vancouver, British Columbia, Canada
  • 2009
    • Ludwig-Maximilian-University of Munich
      • Department of Neurology
      München, Bavaria, Germany
  • 1993–2001
    • Muhimbili University of Health and Allied Sciences
      • Department of Internal Medicine
      Dār es Salām, Dar es Salaam, Tanzania