Traditional practices and perceptions of epilepsy among people in Roma communities in Bulgaria

Abstract

Purpose: We attempted to identify cultural aspects of epilepsy among the Roma community in Bulgaria by elucidating cultural beliefs, traditional treatments, and potential markers of stigma.Methods: We established representative discussion groups among five distinct Roma subgroups (Lom, Kalderas, Thracian Tinsmiths (Tinkers), Kyustendil Xoroxane and Kopanari) from different Bulgarian regions. Data about local beliefs and treatment strategies were gathered.Results: Most people were familiar with convulsions but non-convulsive focal seizures were seen not as epileptic but mainly as a "mental problem". Beliefs about putative etiologies for epilepsy were not uniform as some considered environmental and external factors such as high environmental temperatures, electric shocks, loud music, and fever as causes of seizures while others listed bad experiences, stress, trauma, fear and fright as possible causes. Epilepsy was seen by some as a divine punishment or resulting from black magic. Most considered epilepsy shameful and an obstacle to children attending school. Despite local differences, there was a uniform belief that epilepsy is incurable by Western medicine and people usually resort to traditional healers. A variety of rituals performed by local healers to treat epilepsy were described.Discussion: Misconceptions about epilepsy may contribute to stigmatization in this population; this may in turn contribute to a high treatment gap in this group. As a result, the majority of Roma children with epilepsy leave school early, are greatly limited in their choice of spouse (particularly girls), and marriages often occur between people with epilepsy or those with a family history of epilepsy.

Misperception about epilepsy among common public in Balochistan

“…Surveys in underdeveloped nations among several cultures show widespread views, such as that epilepsy is a communicable condition, or a kind of mental retardation, it happens due to black magic or evil spirit. 14,15 The same sorts of misconceptions about epilepsy have been found in Pakistani studies. 16…”

“…24,25 Majority of the participants in this study believed that epilepsy was caused by ghost attack (48.8%) and black magic (29.3%); these are nearly close to the figures reported by Iranian and Bulgarian study. 14,26 y. Many of the respondents believed that epileptic seizure could be relieved by sniffing shoes.…”

Mortality implications and factors associated with nonengagement in a public epilepsy care initiative in a transient population

“…We were unable to establish contact with a large number of people who did not engage as they were mainly impoverished interstate migrants, thus, predisposed to emigration and relocation. Epilepsy in transient populations has been previously addressed 30 . The challenges presented to implementing a care program including barriers to care provision by emigration in resource-constrained settings, however, have not been previously emphasized.…”

Diagnosis of Epilepsy by Traditional Healers and Its Implications on Management in the Selected Rural Communities of Limpopo and Mpumalanga Provinces: A Qualitative Study

“… 11 , 12 In Kilifi, Kenya, and Bobo-Dioulasso, Burkina Faso, traditional therapeutic treatments for epilepsy are popular. 13 For a first seizure, a nail is swiftly located and hammered into the spot where the person’s skull was initially touched during the seizure, with the healer exclaiming, “It shall stay here!” The person then grasps the trunk of a young tree. While chanting, a healer slashes the neck of a hen, and the hen’s blood is rubbed on the individual’s upper body.…”