Prevalence and Incidence of Epilepsy Associated with Convulsive Seizures in Rural Bolivia. A Global Campaign against Epilepsy Project.

OBJECTIVE: we performed a three-stages door-to-door survey to estimate incidence and prevalence of epilepsy associated with convulsive seizures (EACS) in a rural area of Bolivia. METHODS: the study was carried out in the Cordillera Province, southern-eastern Bolivia. One hundred fourteen rural communities with a total population of 18,907 inhabitants were included in the survey. In order to identify subjects with EACS, trained fieldworkers administered a validated single screening question to the householders (stage I). A second face-to-face questionnaire was administered to each positive subject (stage II) that, in case of positive answer, underwent a complete neurological examination to confirm the diagnosis (stage III). We estimated age and sex specific life-time and active EACS prevalence at the prevalence day (30th June 2010). Incidence risk was evaluated for the 10-year period between January 2000 and December 2010. RESULTS: on prevalence day we identified 136 subjects with EACS, 124 of whom had active epilepsy. The life-time prevalence of EACS was 7.2/1,000 (7.6/1,000 age-adjusted to the world standard population) while the prevalence of active EACS was 6.6/1,000 (6.7/1,000 age-adjusted to the world standard population). Both life-time and active prevalence showed a peak (10.3/1,000) in the 15-24 years age group and, overall, were higher among women. During the incidence study period, 105 patients living in the study area had the onset of EACS. The crude incidence risk was 55.4/100,000 (49.5/100,000 age-adjusted to the world standard population). Incidence was slightly but not significantly higher among women (58.9/100,000 versus 51.9/100,000). CONCLUSIONS: the present study demonstrated a considerable burden of EACS in the Bolivian Chaco, showing prevalence and incidence estimates close to those reported for low and middle- income countries and underlying the need of treatment programs.

Epilepsy-associated stigma in Bolivia: a community-based study among the Guarani population: an International League Against Epilepsy/International Bureau for Epilepsy/World Health Organization Global Campaign Against Epilepsy Regional Project.

Epilepsy is associated with a significant burden of social stigma that appears to be influenced by psychosocial and cultural factors. Stigma has a negative effect on the management of people with epilepsy (PWE), representing one of the major factors that contribute to the burden of epilepsy. To assess stigma perception among the Guarani population, one hundred thirty-two people living in Guaraní communities in Bolivia were invited to complete the Stigma Scale of Epilepsy questionnaire. The main determinants of stigma identified were: the fear linked to loss of control, the feelings of sadness and pity toward PWE, the difficulties faced by PWE in the professional and relationship fields, the level of education and type of seizure. Our study pointed out that, in this population, PWE face difficulties in everyday life because of epilepsy-associated stigma and the results attest to the importance of promoting community-based educational programs aimed at reducing the stigmatization process.

Sociocultural dimension of epilepsy: an anthropological study among Guaraní communities in Bolivia--an International League Against Epilepsy/International Bureau for Epilepsy/World Health Organization Global Campaign against Epilepsy regional project.

This study was performed to analyze sociocultural beliefs about epilepsy among Guaraní communities in Bolivia. People with epilepsy, their family members, the general population, and local health care personnel were interviewed about the meaning of and beliefs, feelings, and practices concerning epilepsy. Epilepsy is called mano-mano, a term that means being in a constant passage between life and death. The disease is attributed mainly to a failure to observe a fasting period and to other eating habits. Natural remedies are the most recommended treatments even though half of respondents reported that antiepileptic drugs may be effective. The concept of epilepsy as an embodied disease with natural causes appears to differ from that documented in other traditional societies. People with epilepsy do not represent a threat to the community, which seems to have an attitude aimed at their protection. Moreover, people from these communities appear to favor a combination of biomedical and traditional care systems.