Epilepsy-related stigma and attitudes: Systematic review of screening instruments and interventions - Report by the International League Against Epilepsy Task Force on Stigma in Epilepsy.

OBJECTIVE: This is a systematic review aimed at summarizing the evidence related to instruments that have been developed to measure stigma or attitudes toward epilepsy and on stigma-reducing interventions. METHODS: This review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) standards. A broad literature search (1985-2019) was performed in 13 databases. Articles were included if they described the development and testing of psychometric properties of an epilepsy-related stigma or attitude scale or stigma-reducing interventions. Two reviewers independently screened abstracts, reviewed full-text articles, and extracted data. Basic descriptive statistics are reported. RESULTS: We identified 4234 abstracts, of which 893 were reviewed as full-text articles. Of these, 38 met inclusion criteria for an instrument development study and 30 as a stigma-reduction intervention study. Most instruments were initially developed using well-established methods and were tested in relatively large samples. Most intervention studies involved educational programs for adults with pre- and post-evaluations of attitudes toward people with epilepsy. Intervention studies often failed to use standardized instruments to quantify stigmatizing attitudes, were generally underpowered, and often found no evidence of benefit or the benefit was not sustained. Six intervention studies with stigma as the primary outcome had fewer design flaws and showed benefit. Very few or no instruments were validated for regional languages or culture, and there were very few interventions tested in some regions. SIGNIFICANCE: Investigators in regions without instruments should consider translating and further developing existing instruments rather than initiating the development of new instruments. Very few stigma-reduction intervention studies for epilepsy have been conducted, study methodology in general was poor, and standardized instruments were rarely used to measure outcomes. To accelerate the development of effective epilepsy stigma-reduction interventions, a paradigm shift from disease-specific, siloed trials to collaborative, cross-disciplinary platforms based upon unified theories of stigma transcending individual conditions will be needed.

Systematic review of frequency of felt and enacted stigma in epilepsy and determining factors and attitudes toward persons living with epilepsy-Report from the International League Against Epilepsy Task Force on Stigma in Epilepsy.

OBJECTIVE: To review the evidence of felt and enacted stigma and attitudes toward persons living with epilepsy, and their determining factors. METHODS: Thirteen databases were searched (1985-2019). Abstracts were reviewed in duplicate and data were independently extracted using a standardized form. Studies were characterized using descriptive analysis by whether they addressed "felt" or "enacted" stigma and "attitudes" toward persons living with epilepsy. RESULTS: Of 4234 abstracts, 132 met eligibility criteria and addressed either felt or enacted stigma and 210 attitudes toward epilepsy. Stigma frequency ranged broadly between regions. Factors associated with enacted stigma included low level of knowledge about epilepsy, lower educational level, lower socioeconomic status, rural areas living, and religious grouping. Negative stereotypes were often internalized by persons with epilepsy, who saw themselves as having an "undesirable difference" and so anticipated being treated differently. Felt stigma was associated with increased risk of psychological difficulties and impaired quality of life. Felt stigma was linked to higher seizure frequency, recency of seizures, younger age at epilepsy onset or longer duration, lower educational level, poorer knowledge about epilepsy, and younger age. An important finding was the potential contribution of epilepsy terminology to the production of stigma. Negative attitudes toward those with epilepsy were described in 100% of included studies, and originated in any population group (students, teachers, healthcare professionals, general public, and those living with epilepsy). Better attitudes were generally noted in those of younger age or higher educational status. SIGNIFICANCE: Whatever the specific beliefs about epilepsy, implications for felt and enacted stigma show considerable commonality worldwide. Although some studies show improvement in attitudes toward those living with epilepsy over time, much work remains to be done to improve attitudes and understand the true occurrence of discrimination against persons with epilepsy.

Circadian rhythm and profile in patients with juvenile myoclonic epilepsy and temporal lobe epilepsy.

OBJECTIVE: This study intended to compare the circadian rhythm and circadian profile between patients with juvenile myoclonic epilepsy (JME) and patients with temporal lobe epilepsy (TLE). METHOD: We enrolled 16 patients with JME and 37 patients with TLE from the Outpatient Clinic of UNICAMP. We applied a questionnaire about sleep-wake cycle and circadian profile. RESULTS: Fourteen (87%) out of 16 patients with JME, and 22 out of 37 (59%) patients with TLE reported that they would sleep after seizure (p < 0.05). Three (19%) patients with JME, and 17 (46%) reported to be in better state before 10:00 AM (p < 0.05). CONCLUSION: There is no clear distinct profile and circadian pattern in patients with JME in comparison to TLE patients. However, our data suggest that most JME patients do not feel in better shape early in the day.

Circadian rhythm and profile in patients with juvenile myoclonic epilepsy and temporal lobe epilepsy / Ritmo e perfil circadiano em pacientes com epilepsia mioclônica juvenil e epilepsia de lobo temporal

Objective This study intended to compare the circadian rhythm and circadian profile between patients with juvenile myoclonic epilepsy (JME) and patients with temporal lobe epilepsy (TLE). Method We enrolled 16 patients with JME and 37 patients with TLE from the Outpatient Clinic of UNICAMP. We applied a questionnaire about sleep-wake cycle and circadian profile. Results Fourteen (87%) out of 16 patients with JME, and 22 out of 37 (59%) patients with TLE reported that they would sleep after seizure (p < 0.05). Three (19%) patients with JME, and 17 (46%) reported to be in better state before 10:00 AM (p < 0.05). Conclusion There is no clear distinct profile and circadian pattern in patients with JME in comparison to TLE patients. However, our data suggest that most JME patients do not feel in better shape early in the day. .

Objetivo Este estudo pretende comparar o ritmo circadiano e o perfil circadiano entre pacientes com epilepsia mioclônica juvenil (EMJ) e epilepsia de lobo temporal (ELT). Método Nós entrevistamos 16 pacientes com EMJ e 37 com ELT do ambulatório da UNICAMP. Nós aplicamos um questionário sobre ciclo sono-vigília e perfil circadiano. Resultados Quatorze (87%) de 16 pacientes com EMJ e 22 de 37 (59%) pacientes com ELT relataram que eles apresentam sonolência pós-crise (p < 0,05). Três (19%) pacientes com EMJ e 17 (46%) relataram um melhor estado geral antes das 10h00min (p < 0,05). Conclusão Não há uma clara diferença de ritmo e de perfil circadiano entre pacientes com EMJ e ELT. No entanto, nossos dados sugerem que a maioria dos pacientes com EMJ não se sentem em sua melhor forma cedo pela manhã. .

X Encontro Nacional da Federação Brasileira de Epilepsia (Epibrasil): debates com autoridades federais, estaduais e municipais proporcionam avanços para tirar a epilepsia das sombras / first National Meeting of Associations and Support Groups of Epilepsy

Since the launch of the “Manifesto of Campinas”, in 2003, during the first National Meeting of Associations andSupport Groups of Epilepsy, organized and conducted by ASPE - Health Care of Patients with Epilepsy, official executor of theDemonstration Project on Epilepsy in Brazil (WHO-ILAE-IBE), associations of people with epilepsy have been organized byEpibrasil – the Brazilian Federation of Epilepsy, to demand public policies for integral attention to this huge number of people inneed of assistance in all spheres of their lives especially in the field of health, education, labor and social security. Objective: To reportthe highlights of the X National Meeting of the Brazilian Federation of Epilepsy, that happened on 16 and 17 March 2012, in BeloHorizonte - MG. Method: We used descriptive qualitative analysis of events. Results: The event was attended by representatives ofassociations of people with epilepsy from several Brazilian states, representatives of specialized agencies serving people with epilepsyin Minas Gerais, the Municipality of Belo Horizonte, the Legislative Assembly of Minas Gerais, the Chamber Federal Chamber ofProsecutors and the Federal University of Minas Gerais. The Meeting was organized by the Association of Epilepsy of of Minas Gerais- AMAE, Academic League of Epilepsy of the Federal University of Minas Gerais - LAE/UFMG and the Center for Neuroscienceof the UFMG - NNC. The following associations were present: ASPE, Apedf, Aspepb, MAPE, Apeeron, AMAE, AEPC, ARE,Apeeac, ASCAE, AFAG and LAE-UFMG...

Desde 2003, quando do lançamento do Manifesto de Campinas durante a realização do I Encontro Nacional deAssociações e Grupos de Apoio de Epilepsia, organizado e realizado pela ASPE - Assistência à Saúde de Pacientes com Epilepsia,executora oficial do Projeto Demonstrativo em Epilepsia no Brasil da OMS-ILAE-IBE, as associações de pessoas com epilepsia seorganizam, por meio da Epibrasil – Federação Brasileira de Epilepsia, para reivindicar políticas públicas para atenção integral a esteenorme contingente de pessoas que carece de atendimento em todas as esferas de suas vidas, especialmente no campo da saúde,da educação, do trabalho e da previdência social. Objetivo: Relatar os principais destaques do X Encontro Nacional da FederaçãoBrasileira de Epilepsia que aconteceu nos dias 16 e 17 de março de 2012, em Belo Horizonte – MG. Método: Foi utilizada análisequalitativa descritiva dos eventos. Resultados: O evento contou com a presença de representantes de associações de pessoas comepilepsia de vários estados brasileiros, de representantes dos serviços especializados que atendem pessoas com epilepsia em MinasGerais, da Câmara Municipal de Belo Horizonte, da Assembleia Legislativa de Minas Gerais, da Câmara Federal, do MinistérioPúblico e da Universidade Federal de Minas Gerais. A organização esteve a cargo da Associação Mineira de Epilepsia - AMAE, daLiga Acadêmica de Epilepsia da Universidade Federal de Minas Gerais – LAE/UFMG e do Núcleo de Neurociências da UFMG –NNC. Compareceram as seguintes associações: ASPE, Apedf, Aspepb, MAPE, Apeeron, AMAE, AAPE, ARE, Apeeac, ASCAE,AFAG e LAE-UFMG...(

Structural abnormalities of the thalamus in juvenile myoclonic epilepsy.

Studies have suggested that the thalamus is a key structure in the pathophysiology of juvenile myoclonic epilepsy. The objective of the present investigation was to examine the thalami of patients with juvenile myoclonic epilepsy using a combination of multiple structural neuroimaging modalities. The association between these techniques may reveal the mechanisms underlying juvenile myoclonic epilepsy and help to identify the neuroanatomical structures involved. Twenty-one patients with juvenile myoclonic epilepsy (13 women, mean age=30±9 years) and a control group of 20 healthy individuals (10 women, mean age=31±8 years) underwent MRI in a 2-T scanner. The volumetric three-dimensional sequence was used for structural investigation. Evaluation of the thalamus comprised voxel-based morphometry, automatic volumetry, and shape analysis. Comparisons were performed between patient and control groups. Voxel-based morphometry analysis identified areas of atrophy located in the anterior portion of the thalamus. Post hoc analysis of automatic volumetry did not reveal significant differences between the groups. Shape analysis disclosed differences between patients and controls in the anterior and inferior portions of the right thalamus and in the anterior portion of the left thalamus. The present investigation confirms that thalami of patients with juvenile myoclonic epilepsy are structurally abnormal with impairments located mainly in the anterior and inferior sections.

Partial reversibility of hypothalamic dysfunction and changes in brain activity after body mass reduction in obese subjects.

OBJECTIVE: Inflammation and dysfunction of the hypothalamus are common features of experimental obesity. However, it is unknown whether obesity and massive loss of body mass can modify the immunologic status or the functional activity of the human brain. Therefore, the aim of this study was to determine the effect of body mass reduction on brain functionality. RESEARCH DESIGN AND METHODS: In humans, changes in hypothalamic activity after a meal or glucose intake can be detected by functional magnetic resonance imaging (fMRI). Distinct fMRI analytic methods have been developed to explore changes in the brain's activity in several physiologic and pathologic conditions. We used two analytic methods of fMRI to explore the changes in the brain activity after body mass reduction. RESULTS: Obese patients present distinct functional activity patterns in selected brain regions compared with lean subjects. On massive loss of body mass, after bariatric surgery, increases in the cerebrospinal fluid (CSF) concentrations of interleukin (IL)-10 and IL-6 are accompanied by changes in fMRI patterns, particularly in the hypothalamus. CONCLUSIONS: Massive reduction of body mass promotes a partial reversal of hypothalamic dysfunction and increases anti-inflammatory activity in the CSF.

Epilepsy stigma: what do we know and where next?

Stigma is a major issue for people who develop epilepsy. Reducing stigma is a major focus of activity for the epilepsy patient support groups globally. In this paper, we introduce some key ideas and debates about the nature of and drivers for the stigma of epilepsy, including recent arguments about the need to frame analyses of the nature of epilepsy stigma within sociological debates about conflict and power. We then consider the role of the legislative process for redressing power imbalances that promote or maintain epilepsy stigma; and the value of tailored educational campaigns and programmes directed at stigma reduction. Finally, we consider the nature of 'difference' as experienced by people with epilepsy and how that difference translates into stigma; and provide evidence from a specific targeted intervention to combat epilepsy stigma that its reduction is an achievable goal.

Insight controlled for cognition in deficit and nondeficit schizophrenia.

Patients with deficit schizophrenia have worse cognition and poorer social functioning compared to the nondeficit ones. Insight is another domain in which these two groups might differ, but data on insight impairment in deficit versus nondeficit schizophrenia are still scarce. We compared 29 patients with deficit schizophrenia to 44 nondeficit patients and found a tendency to poorer insight in the deficit group. However such tendency disappeared when analysis was controlled for cognition, a domain in which both groups differed significantly. This finding reinforces the pressing need for simultaneous assessment of the several dimensions or domains of schizophrenic psychopathology.

Relatório do IX Encontro Nacional de Associações e Grupos de Pacientes com Epilepsia / IX National Meeting of Associations and Support Group of People with Epilepsy

A Epi-Brasil realiza várias atividades para fortalecer o movimento nacional de epilepsia. Uma delas é o Encontro Nacional de Associações e Grupos de Pacientes com Epilepsia, mostrado neste artigo. O evento foi realizado nos dias 18 e 19 de março de 2011 na cidade de Ipatinga, MG, contando com a participação de mais de 250 pessoas e 10 entidades. Como acontece todos os anos, o evento teve dois momentos principais: 1. Palestrantes debateram temas atuais sobre a epilepsia e 2. As associações puderam expor suas atividades, conquistas e dificuldades, reforçando a reflexão e a troca de experiências. Além disso, a Assembléia Geral da Epi-Brasil teve as seguintes resoluções: 1) tema escolhido para o próximo ano: "Queremos Políticas Públicas para a Epilepsia". 2) O X Encontro Nacional das Associações e Grupos de Pacientes em Epilepsia: realizado nos dias 16 e 17 de março de 2012, em Goiânia, sob a organização da ASPEG. 3) Fortalecer sempre o trabalho e a participação das associações na Federação, através inclusive da melhor troca de informações entre as mesmas. 4) Continuar com a cadeira no Conselho Nacional de Saúde e no Fórum Nacional de Patologias Crônicas. 5) Permanecer na luta para aprovar, com o Ministério da Saúde, a Minuta que institui um programa de epilepsia na atenção básica. Com isso, o evento foi encerrado na certeza de que estamos no caminho certo.

Epi-Brazil performed some activities as a part of national movement of epilepsy in our country. The IX National Meeting of Associations and Support Group of People with Epilepsy was held in March 18-19th, 2011, in Ipatinga, MG, with the participation of over 250 people and 10 entities. The event was performed in two principal moments: 1. A board of specialists on epilepsy discussed important themes about epilepsy and 2. The epilepsy' associations presented their activities, difficulties and successes. The major resolutions of the General Assembly were: 1) "We want public policy for Epilepsy" was chosen as the central theme of the 2011 campaign; 2) X National Meeting of Associations and Support Group of People with Epilepsy will take place in March 16-17th of 2012, in Goiania-GO. 3) Reinforcement of involvement of associations in the Epi-Brazil, especially through better exchange of information. 4) Continuity in the Conselho Nacional da Saúde and Fórum Nacional de Patologias Crônicas. 5) Staying in the discussion with the Ministry of Health to pass a Law that establishes a National Program for Epilepsy in primary care.

Grupos de Interação Social (GIS): estratégia de empowerment para pessoas com epilepsia / Social Interaction Group (GIS): a strategy of empowerment for people with epilepsy

INTRODUÇÃO: O manejo da epilepsia vai além de controle das crises e, para uma abordagem integrativa, começamos a trabalhar com os Grupos de Interação Social (GIS) na epilepsia. OBJETIVO: Realizar grupos em profissionais da saúde e educação para que eles possam se apoderar desta dinâmica para depois aplicá-los em suas comunidades, locais de trabalho, com seus pacientes e equipe de trabalho. METODOLOGIA: foram realizados dois GIS - com 21 profissionais da área social, saúde e educação na cidade de Pedreira. Para avaliar mudanças, foram aplicados questionários validados (Questionário de Autoestima, Questionário de Resiliência, Inventário de Habilidades Sociais e Escala de Estigma na Epilepsia) antes e depois dos GIS. RESULTADOS: Os grupos permitiram aprender mais sobre epilepsia, trocar experiências e contribuir para o crescimento pessoal e profissional, reforçando a solidariedade e a prática da cidadania. Além disso, o uso da Medicina Tradicional Chinesa reforçou a visão do ser humano como ser integral. Os questionários aplicados no início dos grupos (pré-teste) e ao final (pós-teste) mostraram mudanças positivas. CONCLUSÕES: Pôde-se observar uma melhora em todos os itens avaliados, mostrando que os sujeitos, mesmo sendo profissionais, puderam melhorar suas habilidades sociais e com isso, seu poder de resiliência. A aplicação do GIS é prática, com baixos custos de operacionalização, o que permite sua utilização em locais diversos e pode ser útil para outras situações ou condições crônicas com impacto semelhante ao da epilepsia.

INTRODUCTION: The management of epilepsy goes beyond seizure control. So, the Social Interaction Groups (GIS) is an alternative to this integrative approach in epilepsy. PURPOSE: To carry out groups dynamics for health allied professional, social workers, and educators in order for them to use GIS in their communities and for patients. METHODOLOGY: We conducted two GIS - with 21 professionals from social, education and health Departments of city Pedreira. We used validated questionnaires (Self-Esteem Questionnaire, Resilience Questionnaire, Social Skills Inventory and Stigma Scale of Epilepsy) before and after the GIS. RESULTS: The groups showed improvement in knowledge about epilepsy and allowed to share experiences and contribute to solidarity and sense of citizenship. In addition, the use of Traditional Chinese Medicine has reinforced the holistic view of human being. The questionnaires used (pre and post-test) showed positive changes. CONCLUSIONS: It was observed an improvement in all items evaluated, showing that subjects could improve their social skills and, consequently, their resilience. The application of GIS is practical, with a low-cost operation and allows performance in other locations within other situations of chronic conditions that have similar epilepsy's impact.

Relatório do VIII Encontro Nacional de Associações e Grupos de Pacientes com Epilepsia / Report of the VIII National Meeting of Associations and Support Group of People with Epilepsy

Como parte do movimento nacional da epilepsia no Brasil, realizado pela Epi-Brasil, o VIII Encontro Nacional de Associações e Grupos de Pacientes com Epilepsia foi realizado nos dias 19 e 20 de março de 2010 na cidade de Campinas-SP. O evento foi iniciado com uma exposição clara sobre o que é epilepsia. Após esta exposição, foi aberto um tempo livre para os participantes compartilharem suas experiências e tirarem suas dúvidas sobre a epilepsia. No dia seguinte, as associações puderam apresentar suas conquistas e suas dificuldades no último ano de trabalho. Para finalizar, foi realizada a Assembléia Geral, que teve como resoluções: 1. Eleição da nova diretoria. 2. Tema anual escolhido para 2010: "Epilepsia sim, preconceito não". 3. Fortalecer o combate ao preconceito na epilepsia, começando pelo uso de termos mais adequados: os termos "epiléptico" e "portador" não devem ser utilizados. 4. As entidades devem, nos eventos públicos, fazer com que o Ministério Público e a Defensoria Pública fiquem cientes das ações nacionais para a epilepsia. 5. Será realizado um evento sobre epilepsia em Rondônia, em setembro de 2010, com apoio da Epi-Brasil. 6. Fortalecer cada vez mais o trabalho e a participação das associações na Federação. 5. Permanecer com a cadeira no Conselho Nacional de Saúde e no Fórum Nacional de Patologias Crônicas. 6. Aprovar, junto ao Ministério da Saúde, a Minuta que institui programa de epilepsia na atenção básica. 7. O IX Encontro Nacional das Associações e Grupos de Pacientes em Epilepsia será realizado nos dias 18 e 19 de março de 2011, na cidade de Ipatinga, MG.

As a part of national movement of epilepsy in our country, the VIII National Meeting of Associations and Support Group of People with Epilepsy was held on March 19-20th, 2010, in Campinas, SP. In the first part, a board of specialists on epilepsy answered the questions from the audience. In the second part, the epilepsy' associations presented their activities. The major resolutions of the meeting were: 1. Election of a new board of directors of Epi-Brasil; 2. "Epilepsy yes, prejudice no" was chosen as the central theme of the 2010 campaign; 3. Usage of adequate terms to refer to the patients (to not use the term "epileptic"). 4. in public events, it's recommended to invite the Ministry of Public Defense to join the national actions for epilepsy. 5. An event on epilepsy will be held in Rondônia, in September 2010, with support from Epi-Brasil. 6. Reinforcement of the EPI-Brasil associations; 5. Continuity in the Conselho Nacional da Saúde; 6. Establishment of the actions to approve Minuta of Ministry of Health; 7. The IX National Meeting of Associations and Support Group of People with Epilepsy will take place in Ipatinga-MG, during the period of March 18-19h of 2011.

Psychiatric comorbidity and suicidal behavior in epilepsy: a community-based case-control study.

PURPOSE: To provide information about psychiatric comorbidity and suicidal behavior in people with epilepsy compared to those without epilepsy from a community sample in Brazil. METHODS: An attempt was made to evaluate all 174 subjects with epilepsy (cases) identified in a previous survey. For every case identified, an individual without epilepsy (control) matched by sex and age was selected in the same neighborhood. A structured interview with validated psychiatric scales was performed. One hundred and fifty-three cases and 154 controls were enrolled in the study. RESULTS: People with epilepsy had anxiety more frequently [39.4% vs. 23.8%, odds ratio (OR) 2.1, 95% confidence interval (CI) 1.2-3.5; p = 0.006], depression (24.4% vs. 14.7%, OR 1.9, 95% CI 1.01-3.5; p = 0.04), and anger (55.6% vs. 39.7%, OR 1.9, 95% CI 1.2-3.1; p = 0.008). They also reported more suicidal thoughts [36.7% vs. 23.8%, OR 1.8, 95% CI 1.1-3.1; p = 0.02), plans (18.2% vs. 3.3%, OR 2.0, 95% CI 1.0-4.0; p = 0.04), and attempts (12.1% vs. 5.3%, OR 2.4, 95% CI 1.1-3.2, p = 0.04) during life than controls. CONCLUSIONS: These findings call attention to psychiatric comorbidity and suicidal behavior associated with epilepsy. Suicide risk assessment, mental evaluation, and treatment may improve quality of life in epilepsy and ultimately prevent suicide.

Perception and attitudes towards epilepsy: point of view of professionals allied to medicine from Mobile Emergency Service in Campinas / Percepção e atitudes sobre a epilepsia: ponto de vista dos profissionais de saúde do Serviço de Atendimento Móvel de Urgência em Campinas

INTRODUCTION: Epilepsy is very prevalent in our society, but unfortunately lack of knowledge is still very common, contributing to psycho-social difficulties to people with epilepsy. PURPOSE: The aim of this study was to assess the epilepsy' perception and attitudes by professionals of emergency medical service in Campinas, Brazil. MATERIAL AND METHODS: This study was carried out with professionals of SAMU-192, who participated on the VII Stroke Workshop of Campinas in November 2007. RESULTS: One hundred-forty nine (149) professionals answered the questionnaire (49 percent women, average age of 37 years, range from 21 to 59 year). Ninety (60 percent) were professionals allied to medicine (nurses, health auxiliary, dentists), six (4 percent) were physicians and 53 (36 percent) were other professions (secretary, driver). In overall, a great majority of the subjects had an appropriate knowledge regarding epilepsy. But, some beliefs are still present. In relation to epilepsy' perception, some wrong ideas appeared, as epilepsy is a contagious disease, people with epilepsy can not practice physical exercise or to work. Also, the doubts regarding pregnancy and treatment of epilepsy were observed. Regarding attitudes during an epileptic seizure, some inadequate attitudes appeared: to put something in patient's mouth, to restrict the patients' movements or give something strong to smell (alcohol or vinegar) in order to stop the seizure. CONCLUSION: In this context, it is necessary a continuous education programs to the allied health professionals to improve the perception and attitudes, bringing epilepsy out of the shadows.

INTRODUÇÃO: Epilepsia é uma condição muito comum em nossa sociedade, mas infelizmente ainda convive com lacunas no conhecimento, contribuindo para dificuldades no ajustamento psicossocial da pessoa com epilepsia. OBJETIVO: avaliar a percepção e as atitudes dos profissionais de saúde do SAMU-192 sobre a epilepsia. MATERIAL E MÉTODOS: este estudo foi realizado com profissionais que trabalham no SAMU-192 durante o VII Workshop AVC - Campinas realizado em novembro de 2007, no qual os participantes responderam a um questionário estruturado sobre epilepsia. RESULTADOS: Cento e quarenta e nove (149) pessoas responderam ao questionário (49,6 por cento do sexo feminino e idade média de 37 anos - IC=21-59 anos). Quanto às especialidades temos 90 (60,4 por cento) de profissionais de saúde em geral (enfermeiros, técnicos de enfermagem, dentistas), seis (4,0 por cento) de médicos e 53 (35,6 por cento) de outras profissões técnicas (auxiliares de secretaria, motoristas). No geral, a maioria das pessoas tem um conhecimento adequado sobre epilepsia. Porém, algumas crenças ainda estão presentes. No que se refere à percepção, idéias erradas apareceram, como epilepsia é uma doença contagiosa, pessoas com epilepsia não podem praticar esportes ou trabalhar. Além disso, dúvidas referentes à gestação e ao tratamento da epilepsia também foram observadas. Com relação às atitudes durante uma crise epiléptica, apareceram: colocar algum objeto na boca do paciente, restringir movimentos do paciente ou dar álcool para a pessoa cheirar para poder interromper a crise. CONCLUSÃO: Neste contexto, são necessários programas de treinamento continuado para profissionais da área da saúde para melhorar a percepção e as atitudes perante esta condição, tirando assim a epilepsia das sombras.

Relatório do VII Encontro Nacional de Associações e Grupos de Pacientes com Epilepsia / Report of VII National Meeting of Associations and Support Group of People with Epilepsy

Como parte do movimento nacional da epilepsia em nosso país, o VII Encontro Nacional de Associações e Grupos de Pacientes com Epilepsia foi realizado nos dias 27 e 28 de março de 2009 na cidade de João Pessoa-PB. O evento iniciou-se com um curso de capacitação da ASPE sobre epilepsia para os profissionais de saúde. Nas palestras proferidas, os temas enfatizaram aspectos clínicos e psicossociais da epilepsia, promovendo uma rica participação do público presente. Para as entidades que trabalham na área foram discutidas as maneiras pelas quais podemos melhorar o atendimento médico e psicossocial às pessoas com epilepsia, enfatizando articulação da rede de atenção básica, capacitação das equipes de saúde, criação de um centro cirúrgico credenciado pelo SUS em João Pessoa para atender todo o Nordeste. Para finalizar o evento, foi realizada a Assembleia Geral da EPI-Brasil, com a intenção de discutir e fortalecer o movimento de epilepsia em nosso país para que continuemos a luta para tirar a epilepsia das sombras. As resoluções da Assembleia foram: 1. Troca dos cargos dos membros da diretoria da Epi-Brasil, como acordado em 2008. 2. Tema anual escolhido para 2009: "Políticas Públicas". 3. Fortalecer o combate ao preconceito na epilepsia, começando pelo uso de termos mais adequados para o paciente. Dessa maneira, os termos "epiléptico" e "portador" não devem ser utilizados e sim, termos adequados como pessoa com epilepsia ou paciente com epilepsia. 4. Fortalecer cada vez mais o trabalho e a participação das associações na Federação. 5. Permanecer com a cadeira no Conselho Nacional de Saúde e no Fórum Nacional de Patologias Crônicas. 6. Aprovar, junto ao Ministério da Saúde, a Minuta que institui programa de epilepsia na atenção básica. 7. VIII Encontro Nacional das Associações e Grupos de Pacientes em Epilepsia será realizado nos dias 19 e 20 de março de 2010, na cidade de Campinas.

As a part of national movement of epilepsy in our country, the VII National Meeting of Associations and Support Group of People with Epilepsy was held on March 27th-28th, 2009, in João Pessoa-PB. A training course on epilepsy, offered by ASPE, and lectures regarding medical and psychosocial aspects were ministered. For the epilepsy' associations, the themes emphasized networking on primary care, training courses for the healthy professionals and the creation of a surgical center for epilepsy in João Pessoa. To conclude the event, a Epi-Brasil meeting was held to reinforce the national movement. The major resolutions were: 1. change of board of directors of Epi-Brasil; 2. "Public Policy for epilepsy" was chosen as the central theme of the 2009 campaign; 3. Usage of adequate terms in reference to people or patients with epilepsy, the "epileptic" should not be used. 4. Reinforcement of the EPI-Brasil associations; 5. Continuity in the Conselho Nacional da Saúde; 6. Establishment of the actions to approve Minuta of Ministry of Health that sets a epilepsy program for primary care; 7. The VIII National Meeting of Associations and Support Group of People with Epilepsy will take place in Campinas-SP, during the period of March 19-20th of 2010.

Can exercise shape your brain? Cortical differences associated with judo practice.

Experimental animal studies have shown that physical exercise, associated with planning and execution of complex movements, are related to changes in brain structure. In humans, changes in cortical tissue density in relation to physical activity are yet to be fully determined and quantified. We investigated differences on gray matter volume in judo players by using voxel-based morphometry. Comparison between a group of eight internationally competitive judo players and a group of 18 healthy controls showed a significantly higher gray matter tissue density in brain areas of judo players.

Stop saying epileptic.

The purpose of this study was to evaluate the impact upon attitude and perceived stigma of using different terms for referring to persons with epilepsy among teenagers. High school students received one of two versions of a brief questionnaire and of the Stigma Scale of Epilepsy (SSE). The versions differed only in the term used: "people with epilepsy" (PWE) in the group-1 (N = 109) and "epileptics" in group-2 (N = 105). Group-1 responded that 62% of PWE and group-2, that 93% of epileptics have more difficulty finding employment. Group-1 responded that 37% of PWE and group-2, that 70% of epileptics have more difficulties at school. Group-1 responded that 41% of PWE and group-2, that 87% of epileptics are rejected by the society. None of individuals in group-1 indicated that they were prejudiced toward PWE, whereas 3% of group-2 indicated that they were prejudiced toward epileptics. The SSE score (range from 0 to 100, higher the score, higher the degree of perceived stigma) was 49 [confidence interval (CI) = 46.9-52.0] for group-2 and 45 (CI = 42.4-48.2) for group-1 (p = 0.03). In conclusion, the words we use can influence our perceptions and have consequences in terms of social stigma associated with epilepsy. We should refrain from using the term "epileptic" to refer to a person with epilepsy, and consider the importance of our choice of words as part of the effort to bring epilepsy out of the shadows.

VI Semana Nacional de Conscientização da Epilepsia em Campinas / VI National Week of Epilepsy Awareness in Campinas

Apesar da epilepsia ser a condição neurológica grave mais comum existente no mundo, crenças e comportamentos inadequados ainda persistem. Para mudar esta perspectiva, o Projeto Demonstrativo da Campanha Global "Epilepsia fora das sombras" permitiu o engajamento das associações de epilepsia em nosso país, fortalecendo o Movimento Nacional de Epilepsia. Uma das atividades deste movimento é a realização da Semana Nacional de Conscientização de Epilepsia, que acontece todos os anos na semana do dia 09 de setembro, com o objetivo de conscientizar a sociedade sobre a epilepsia. A ASPE realiza esta Semana desde 2003 e os resultados trazem importante fortalecimento ao movimento nacional para tirar a epilepsia das sombras e melhorar a qualidade de vida das pessoas com epilepsia e suas famílias.

Epilepsy is a common neurological condition; however, it is still very frequent to observe myths and inadequate behaviors regarding epilepsy in our society. The National Demonstration Project "Epilepsy out of the shadows" brought important changes in our society through a national movement of epilepsy carried out by lay associations. The National Week of Epilepsy, on the September 9th is one the major national movements with purpose to promote epilepsy awareness within our society about epilepsy. ASPE, a non-governmental organization, participates actively in the movement since its origin in 2003. We believe that the results contribute to reinforce the national movement to bring epilepsy out of the shadows, diminishing the associated stigma and improving the quality of life of people with epilepsy and their families.

Stigma scale of epilepsy: the perception of epilepsy stigma in different cities in Brazil.

PURPOSE: To assess the perception of epilepsy stigma in different regions of Brazil. METHOD: The Stigma Scale of Epilepsy (SSE) questionnaire was applied to people in different Brazilian urban settings. The survey was performed on individual basis; an interviewer read the questions to the subjects and wrote down the answers. The same procedure was applied to all the subjects and took around 10 minutes. RESULTS: 266 questionnaires were completed in four different towns of Brazil (Curitiba=83; São Paulo=47; Vila Velha=79; Ipatinga=57). The overall stigma score was 49.7 (median). Different scores were obtained in each locality. Vila Velha=42; Curitiba=49; São Paulo=52; Ipatinga=54 (ANOVA [2.262]=3.82; p=0.01). CONCLUSION: This study showed differences in the perception of stigma, which may depend on cultural and regional aspects. The concept of stigma has cultural perspectives, depending on the region and the context where each person lives. The understanding of this aspect of epilepsy is important to promote better de-stigmatization campaigns, considering the cultural and social differences.