{"id":3211,"date":"2021-06-10T21:12:00","date_gmt":"2021-06-11T04:12:00","guid":{"rendered":"https:\/\/deepconnections.net\/?p=3211"},"modified":"2025-01-15T18:17:27","modified_gmt":"2025-01-15T23:17:27","slug":"eses-csws","status":"publish","type":"post","link":"https:\/\/deepconnections.net\/pt\/2021\/06\/10\/eses-csws\/","title":{"rendered":"S\u00edndrome de epilepsia rara: ESES, CSWS, EECSWS?"},"content":{"rendered":"<p class=\"wp-block-paragraph\">Este webinar foi transmitido ao vivo em 10 de junho de 2021.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Raro dentro de raro - ESES O estado epil\u00e9ptico el\u00e9trico durante o sono de ondas lentas (ESES), tamb\u00e9m conhecido como onda de picos cont\u00ednuos de sono lento (CSWS) ou encefalopatia epil\u00e9ptica com picos e ondas cont\u00ednuos durante o sono (ou EECSWS) \u00e9 uma epilepsia rara s\u00edndrome que geralmente \u00e9 observada em crian\u00e7as que j\u00e1 t\u00eam epilepsia ou outra s\u00edndrome epil\u00e9ptica.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Neste webinar, voc\u00ea aprender\u00e1 o que procurar e o que pode fazer. Embora ainda se saiba relativamente pouco sobre esse dist\u00farbio, h\u00e1 algumas pesquisas emergentes e testes de medicamentos em andamento.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Os painelistas desta sess\u00e3o s\u00e3o:<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Leah Schust Myers<\/strong> \u2013 Diretora Executiva da Funda\u00e7\u00e3o FamilieSCN2A e m\u00e3e de Ben, que tem epilepsia relacionada ao SCN2A e foi recentemente diagnosticado com ESES. Ela compartilhar\u00e1 quais eram as pistas de que algo estava acontecendo e a jornada em busca de respostas por um territ\u00f3rio altamente desconhecido.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Dr.<\/strong> \u2013 Neurologista Pedi\u00e1trico e Assistente, Instrutor de Neurologia do Departamento de Neurologia, Boston Children&#039;s Hospital e Harvard Medical School, cujos interesses cl\u00ednicos e de pesquisa residem na complexa interface entre sono, epilepsia e gen\u00e9tica.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Carolyn McMicken, Ph.D.<\/strong> \u2013 Diretor de Desenvolvimento Cl\u00ednico \u2013 Neurologia e Doen\u00e7as Raras da Neurocrine Biosciences, uma empresa que explora medicamentos para ajudar pessoas com ESES\/CSWS.<\/p>\n\n\n\n<hr class=\"wp-block-separator\"\/>\n\n\n\n<p class=\"wp-block-paragraph\">Para a maioria das crian\u00e7as, dormir traz uma noite que pode ser repleta de sonhos de explora\u00e7\u00e3o e aventura. Mas, para crian\u00e7as com encefalopatia epil\u00e9ptica com picos e ondas cont\u00ednuas durante o sono (ou EECSWS), o sono \u00e9 preenchido com atividade epil\u00e9ptica cont\u00ednua que leva a graves defici\u00eancias cognitivas e comportamentais. N\u00e3o existem tratamentos aprovados para pacientes pedi\u00e1tricos com EECSWS, mas est\u00e3o em andamento pesquisas cr\u00edticas sobre um medicamento experimental. Venha saber mais sobre esta condi\u00e7\u00e3o rara e sobre este novo tratamento em ensaios cl\u00ednicos.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>O estudo do barco a vapor<\/strong> est\u00e1 procurando crian\u00e7as de 4 a 12 anos com diagn\u00f3stico cl\u00ednico de EECSWS para participarem deste estudo de pesquisa cl\u00ednica de 21 semanas. Clique <strong><a href=\"http:\/\/visit https:\/\/stillwaterprogram.com\/about-the-program\" target=\"_blank\" rel=\"noreferrer noopener\">aqui<\/a> <\/strong>aprender mais.<\/p>\n\n\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-4-3 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe title=\"DEE-P: Picos cont\u00ednuos e status el\u00e9trico epil\u00e9ptico durante o sono - O que saber\" width=\"500\" height=\"375\" src=\"https:\/\/www.youtube.com\/embed\/l0EsxYziU-E?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\">Para mais recursos DEE, confira nosso\u00a0<a href=\"https:\/\/deepconnections.net\/pt\/resource-center-main\/\">centro de recursos<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>This webinar was broadcast live on June 10, 2021. Rare within rare &#8211; ESES Electrical status epilepticus during slow-wave sleep (ESES), also known as continuous spike-wave of slow sleep (CSWS)&hellip;<\/p>","protected":false},"author":4,"featured_media":3325,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_EventAllDay":false,"_EventTimezone":"","_EventStartDate":"","_EventEndDate":"","_EventStartDateUTC":"","_EventEndDateUTC":"","_EventShowMap":false,"_EventShowMapLink":false,"_EventURL":"","_EventCost":"","_EventCostDescription":"","_EventCurrencySymbol":"","_EventCurrencyCode":"","_EventCurrencyPosition":"","_EventDateTimeSeparator":"","_EventTimeRangeSeparator":"","_EventOrganizerID":[],"_EventVenueID":[],"_OrganizerEmail":"","_OrganizerPhone":"","_OrganizerWebsite":"","_VenueAddress":"","_VenueCity":"","_VenueCountry":"","_VenueProvince":"","_VenueState":"","_VenueZip":"","_VenuePhone":"","_VenueURL":"","_VenueStateProvince":"","_VenueLat":"","_VenueLng":"","_VenueShowMap":false,"_VenueShowMapLink":false,"footnotes":""},"categories":[1016,1095,1024,1025],"tags":[1192,1029,1026],"class_list":["post-3211","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-medical","category-seizures-types","category-video","category-webinar","tag-top-viewed","tag-video","tag-webinar"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.1 (Yoast SEO v28.3) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Rare Epilepsy Syndrome: ESES, CSWS, EECSWS?<\/title>\n<meta name=\"description\" content=\"DEE-P Information Resource Center - In this ESES, CSWS, EECSWS rare epilepsy syndrome webinar, learn what to look for and what to do\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/deepconnections.net\/pt\/2021\/06\/10\/eses-csws\/\" \/>\n<meta property=\"og:locale\" content=\"pt_BR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Rare Epilepsy Syndrome: ESES, CSWS, EECSWS?\" \/>\n<meta property=\"og:description\" content=\"This webinar was broadcast live on June 10, 2021. 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