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Epilepsy in the Amazon: An invisible disease in the rain forest
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Abstracts / Journal of the Neurological Sciences 333 (2013) e1–e64
Introduction: Epilepsy is the world's most common and most serious chronic neurological disease affecting near 50 million cases. Epilepsy has well recognized stigma which is defined by Link and Phalen as a status which exists when elements of labeling, stereotyping, separation, status loss, and discrimination occur together in a power situation that's allows them to unfold. Stigma has a major contribution to the reduction of quality of life in people with epilepsy. Objective: The purpose of this study was to determine the types of stigma in PWE and to determine its frequency as well as its association with demographical factors and to determine the coping ability of PWE. Method: Health facility-based cross-sectional analytical study was conducted in charity clinic on 80 people with epilepsy aged from 8 to 70 years. Standardized questionnaire was used for the interview of the patients and assistance was asked from their relative occasionally and the data was analyzed by SPSS16. Results: 16.3% was found to have positive Felt stigma score. Nearly half of PWE had courtesy stigma also coaching stigma affected half of PWE. Fifth of PWE had poor coping score. Age below forty was a determinant factor for the coping of people with epilepsy as well as parent courtesy stigma. Frequency of seizures of more than 3 per month reduced coping score of PWE. Conclusion: Results suggest the great need for psychological counseling for high risk group PWE as shown by the study. doi:10.1016/j.jns.2013.07.218
Abstract — WCN 2013 No: 3122 Topic: 1 — Epilepsy Epilepsy in the Amazon: An invisible disease in the rain forest A.M.R. Souzaa, V.L. Pereiraa, L.S. Saida, C. Chiranoa, A.P.Q. Ramalhob, L.M. Lic,d. aSchool of Medicine of Federal University of Amazonas, Brazil; b Preventive Medicine, School of Medicine of Federal University of Amazonas, Manaus, Brazil; cNeurology, Faculty of Medical Sciences of State University of Campinas, Brazil; dAssistência à Saúde de Pacientes com Epilepsia — ASPE, Campinas, Brazil Background: Epilepsy is a serious disease with a lifetime prevalence of 1–2%. Epilepsy can be cost-effectively treated, yet the treatment gap is still shameless high even in mainstream parts of the globe. One can just wonder how epilepsy is managed in non-easilyaccessible regions like Amazon rain forest. Objective: To assess the perception epilepsy prevalence by the primary care staff working in Amazon region. People and methods: We applied a home-made questionnaire to staff from three primary health care units in the city of Parintins located in the Oriental Amazon. This is part of the Strategy and Plan of Action on Epilepsy of PAHO-WHO/ILAE/IBE carried out by ASPE in Brazil. Results: One-hundred-six people (91 women) answered the questionnaire (3 physicians, 4 nurses, 28 professional-allied-medicine, 60 health agents, and 11 others). When asked about: the prevalence of epilepsy, 76 (71%) did not know; whether they received any training on epilepsy, 41 had training, but only 11/41 (38%) pointed 1–2% as prevalence rate. None of the physicians and nurses knew how many patients should be under their care. When inquired about how many were they have currently, three did not know and the remaining four claimed to have between 2 and 10 patients. Conclusion: The primary health care in Amazon does not have a planning for epilepsy management, as epilepsy seems to be an invisible disease. Actions to increase detection as well as provision of treatment are required in the region to bring epilepsy out of the shadows without cutting a tree. doi:10.1016/j.jns.2013.07.219
Abstract — WCN 2013 No: 3143 Topic: 1 — Epilepsy HLA-B*1502 genotyping in carbamazepine induced Stevens Johnson's syndrome and toxic epidermal necrolysis S.A. Venkatesana, S.M. Rajappab. aNeurology, Tamilnadu Dr. MGR Medical University, India; bNeurology, Cerebrovascular and Vasculitis Research Foundation, Chennai, India Background: Stevens Johnson's Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) are potentially fatal drug reactions caused by carbamazepine (CBZ). A strong association is reported between HLAB*1502 allele and CBZ-induced SJS in Han Chinese. The prevalence of HLA-B*1502 and incidence of CBZ induced SJS/TEN in HLA-B*1502 positive seizure patients is reported. Objective: To study the association of HLA-B*1502 and carbamazepine induced SJS/TEN in epileptic patients from South India. Methods: Single center, prospective, case control study over four years. 7 ml of blood in ethylene diamine tetra acetic acid (EDTA) was collected from 352 patients on CBZ and 100 controls. After DNA separation, HLA-B*1502 genotyping was performed by Polymerase Chain Reaction amplification and gel electrophoresis, using Olerup HLA-B*1502 kits by Sequence Specific Oligopeptide method. Results: 352 seizure patients (165 men and 187 women, mean age: 31.77 years) and 100 controls (50 men and women each, mean age: 32.05 years) were tested for HLA-B*1502. Out of 330 patients on CBZ tested for HLA-B*1502, 66 tested positive and 54 developed SJS/TEN. 2 patients on carbamazepine who tested negative for HLA-B*1502, developed SJS/TEN. Positive Predictive Value for development of SJS/TEN on exposure to CBZ: 81.82%, Negative Predictive Value: 99.30%, Sensitivity: 96.43%, and Specificity: 95.95%. The prevalence of HLA-B*1502 in the epileptic and control groups was 18.20% and 7% respectively. Conclusion: There is a high prevalence HLA-B*1502 allele in South Indian epileptic population on Carbamazepine (18.20%) when compared to the non-epileptic population (7%). There was a strong association of HLA-B*1502 and the development of SJS/TEN in South Indians. doi:10.1016/j.jns.2013.07.220
Abstract — WCN 2013 No: 3139 Topic: 1 — Epilepsy Autoantibodies to neuronal antigens in children with new onset seizures classified according to the revised ILAE classification J. Suleimana,b,c, S. Wrightd, D. Gillc, A. Vincentd, B. Langd, R. Dalea,c. a Discipline of Paediatrics & Child Health, Sydney Medical School, University of Sydney, Sydney, NSW, Australia; bDepartment of Pediatrics, College of Medicine, United Arab Emirates University, Al Ain, United Arab Emirates; cT.Y. Nelson Department of Neurology, The Children's Hospital at Westmead, Sydney, NSW, Australia; dNuffield Department of Clinical Neurology, John Radcliffe Hospital, Oxford, UK Background: Autoantibodies against neuronal antigens are increasingly recognised in many CNS disorders including epilepsy. This includes neuronal surface proteins such as VGKC complex and its components (LGI1, CASPR2 and contactin2), NMDAR, GABABR, AMPAR and glycine receptor (GlyR), as well as intracellular proteins such as GAD. Objectives: We aimed to investigate neuronal antibodies in a cohort of paediatric patients with new onset seizures. Methods: We prospectively recruited 114 children (2 month to 16 years) with new onset seizures presenting between September
Abstracts / Journal of the Neurological Sciences 333 (2013) e1–e64
Introduction: Epilepsy is the world's most common and most serious chronic neurological disease affecting near 50 million cases. Epilepsy has well recognized stigma which is defined by Link and Phalen as a status which exists when elements of labeling, stereotyping, separation, status loss, and discrimination occur together in a power situation that's allows them to unfold. Stigma has a major contribution to the reduction of quality of life in people with epilepsy. Objective: The purpose of this study was to determine the types of stigma in PWE and to determine its frequency as well as its association with demographical factors and to determine the coping ability of PWE. Method: Health facility-based cross-sectional analytical study was conducted in charity clinic on 80 people with epilepsy aged from 8 to 70 years. Standardized questionnaire was used for the interview of the patients and assistance was asked from their relative occasionally and the data was analyzed by SPSS16. Results: 16.3% was found to have positive Felt stigma score. Nearly half of PWE had courtesy stigma also coaching stigma affected half of PWE. Fifth of PWE had poor coping score. Age below forty was a determinant factor for the coping of people with epilepsy as well as parent courtesy stigma. Frequency of seizures of more than 3 per month reduced coping score of PWE. Conclusion: Results suggest the great need for psychological counseling for high risk group PWE as shown by the study. doi:10.1016/j.jns.2013.07.218
Abstract — WCN 2013 No: 3122 Topic: 1 — Epilepsy Epilepsy in the Amazon: An invisible disease in the rain forest A.M.R. Souzaa, V.L. Pereiraa, L.S. Saida, C. Chiranoa, A.P.Q. Ramalhob, L.M. Lic,d. aSchool of Medicine of Federal University of Amazonas, Brazil; b Preventive Medicine, School of Medicine of Federal University of Amazonas, Manaus, Brazil; cNeurology, Faculty of Medical Sciences of State University of Campinas, Brazil; dAssistência à Saúde de Pacientes com Epilepsia — ASPE, Campinas, Brazil Background: Epilepsy is a serious disease with a lifetime prevalence of 1–2%. Epilepsy can be cost-effectively treated, yet the treatment gap is still shameless high even in mainstream parts of the globe. One can just wonder how epilepsy is managed in non-easilyaccessible regions like Amazon rain forest. Objective: To assess the perception epilepsy prevalence by the primary care staff working in Amazon region. People and methods: We applied a home-made questionnaire to staff from three primary health care units in the city of Parintins located in the Oriental Amazon. This is part of the Strategy and Plan of Action on Epilepsy of PAHO-WHO/ILAE/IBE carried out by ASPE in Brazil. Results: One-hundred-six people (91 women) answered the questionnaire (3 physicians, 4 nurses, 28 professional-allied-medicine, 60 health agents, and 11 others). When asked about: the prevalence of epilepsy, 76 (71%) did not know; whether they received any training on epilepsy, 41 had training, but only 11/41 (38%) pointed 1–2% as prevalence rate. None of the physicians and nurses knew how many patients should be under their care. When inquired about how many were they have currently, three did not know and the remaining four claimed to have between 2 and 10 patients. Conclusion: The primary health care in Amazon does not have a planning for epilepsy management, as epilepsy seems to be an invisible disease. Actions to increase detection as well as provision of treatment are required in the region to bring epilepsy out of the shadows without cutting a tree. doi:10.1016/j.jns.2013.07.219
Abstract — WCN 2013 No: 3143 Topic: 1 — Epilepsy HLA-B*1502 genotyping in carbamazepine induced Stevens Johnson's syndrome and toxic epidermal necrolysis S.A. Venkatesana, S.M. Rajappab. aNeurology, Tamilnadu Dr. MGR Medical University, India; bNeurology, Cerebrovascular and Vasculitis Research Foundation, Chennai, India Background: Stevens Johnson's Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) are potentially fatal drug reactions caused by carbamazepine (CBZ). A strong association is reported between HLAB*1502 allele and CBZ-induced SJS in Han Chinese. The prevalence of HLA-B*1502 and incidence of CBZ induced SJS/TEN in HLA-B*1502 positive seizure patients is reported. Objective: To study the association of HLA-B*1502 and carbamazepine induced SJS/TEN in epileptic patients from South India. Methods: Single center, prospective, case control study over four years. 7 ml of blood in ethylene diamine tetra acetic acid (EDTA) was collected from 352 patients on CBZ and 100 controls. After DNA separation, HLA-B*1502 genotyping was performed by Polymerase Chain Reaction amplification and gel electrophoresis, using Olerup HLA-B*1502 kits by Sequence Specific Oligopeptide method. Results: 352 seizure patients (165 men and 187 women, mean age: 31.77 years) and 100 controls (50 men and women each, mean age: 32.05 years) were tested for HLA-B*1502. Out of 330 patients on CBZ tested for HLA-B*1502, 66 tested positive and 54 developed SJS/TEN. 2 patients on carbamazepine who tested negative for HLA-B*1502, developed SJS/TEN. Positive Predictive Value for development of SJS/TEN on exposure to CBZ: 81.82%, Negative Predictive Value: 99.30%, Sensitivity: 96.43%, and Specificity: 95.95%. The prevalence of HLA-B*1502 in the epileptic and control groups was 18.20% and 7% respectively. Conclusion: There is a high prevalence HLA-B*1502 allele in South Indian epileptic population on Carbamazepine (18.20%) when compared to the non-epileptic population (7%). There was a strong association of HLA-B*1502 and the development of SJS/TEN in South Indians. doi:10.1016/j.jns.2013.07.220
Abstract — WCN 2013 No: 3139 Topic: 1 — Epilepsy Autoantibodies to neuronal antigens in children with new onset seizures classified according to the revised ILAE classification J. Suleimana,b,c, S. Wrightd, D. Gillc, A. Vincentd, B. Langd, R. Dalea,c. a Discipline of Paediatrics & Child Health, Sydney Medical School, University of Sydney, Sydney, NSW, Australia; bDepartment of Pediatrics, College of Medicine, United Arab Emirates University, Al Ain, United Arab Emirates; cT.Y. Nelson Department of Neurology, The Children's Hospital at Westmead, Sydney, NSW, Australia; dNuffield Department of Clinical Neurology, John Radcliffe Hospital, Oxford, UK Background: Autoantibodies against neuronal antigens are increasingly recognised in many CNS disorders including epilepsy. This includes neuronal surface proteins such as VGKC complex and its components (LGI1, CASPR2 and contactin2), NMDAR, GABABR, AMPAR and glycine receptor (GlyR), as well as intracellular proteins such as GAD. Objectives: We aimed to investigate neuronal antibodies in a cohort of paediatric patients with new onset seizures. Methods: We prospectively recruited 114 children (2 month to 16 years) with new onset seizures presenting between September