{"id":23267,"date":"2012-08-29T16:25:17","date_gmt":"2012-08-29T19:25:17","guid":{"rendered":"http:\/\/www.inclusive.org.br\/?p=23267"},"modified":"2012-08-29T16:25:17","modified_gmt":"2012-08-29T19:25:17","slug":"manifesto-pela-vida-dos-pacientes-com-esclerose-lateral-amiotrofica-assine-e-divulgue","status":"publish","type":"post","link":"https:\/\/inclusivenews.com.br\/?p=23267","title":{"rendered":"Manifesto pela vida dos pacientes com Esclerose Lateral Amiotr\u00f3fica: assine e divulgue!"},"content":{"rendered":"<figure id=\"attachment_23307\" aria-describedby=\"caption-attachment-23307\" style=\"width: 300px\" class=\"wp-caption alignleft\"><a href=\"http:\/\/www.inclusivenews.com.br\/wp-content\/uploads\/eeela.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-23307\" title=\"Paciente com ELA recebe carinho\" src=\"http:\/\/inclusivenews.com.br\/wp-content\/uploads\/eeela-300x131.jpg\" alt=\"Paciente com ELA recebe carinho\" width=\"300\" height=\"131\" \/><\/a><figcaption id=\"caption-attachment-23307\" class=\"wp-caption-text\"> <\/figcaption><\/figure>\n<p>N\u00f3s, pacientes de ELA (Esclerose Lateral Amiotr\u00f3fica) e respectivos familiares, cuidadores, profissionais da sa\u00fade, amigos e simpatizantes da causa da luta contra essa doen\u00e7a, abaixo nomeados, vimos apresentar o presente manifesto, para expressar nossa vontade. Mais que nossa vontade, necessidade e direito dos pacientes.<\/p>\n<p>Em 1869, Jean Martin Charcot, o primeiro professor de neurologia na Salp\u00eatri\u00e8re, e Joffroy descreveram dois pacientes com Atrofia Muscular Progressiva com les\u00f5es associadas na por\u00e7\u00e3o p\u00f3stero-lateral da medula nervosa. Eles n\u00e3o deram o nome de Esclerose Lateral Amiotr\u00f3fica (ELA) para esta entidade, mas determinaram as caracter\u00edsticas essenciais para o seu reconhecimento, desde ent\u00e3o pouco modificadas\u00b9.<\/p>\n<p>De 1869 at\u00e9 os dias atuais, pouco ou nada se evoluiu em termos de abordagem terap\u00eautica para que fosse poss\u00edvel conter os terr\u00edveis males dessa doen\u00e7a e sua fulminante evolu\u00e7\u00e3o.<\/p>\n<p>Eis que, recentemente, foram divulgados excelentes e promissores resultados em testes cl\u00ednicos com c\u00e9lulas-tronco adultas em pacientes de ELA. Entre eles, especialmente dignos de nota s\u00e3o os casos da Neuralstem, na Universidade de Emory, nos Estados Unidos, com o paciente Ted Harada, e da Brainstorm, no hospital Hadassah, em Israel.<\/p>\n<p>Em ambos os testes, conduzidos dentro de estritos padr\u00f5es cient\u00edficos internacionais, os sintomas da ELA regrediram, vis\u00edvel e inegavelmente. Essa regress\u00e3o \u00e9 in\u00e9dita em qualquer dos tratamentos hoje dispon\u00edveis para n\u00f3s, pacientes dessa doen\u00e7a terr\u00edvel.<\/p>\n<p>Sendo essa a primeira esperan\u00e7a concreta de cura ou, ao menos, melhora; a primeira nesga de luz na escurid\u00e3o que \u00e9 a ELA hoje, nos parece indiscut\u00edvel a necessidade de se seguir esse caminho, incrementando as pesquisas com c\u00e9lulas-tronco adultas tamb\u00e9m aqui no Brasil, onde temos cientistas n\u00e3o menos competentes que os do Exterior. Esse incremento pode se dar independentemente dos trabalhos hoje realizados com c\u00e9lulas-tronco embrion\u00e1rias.<\/p>\n<p>\u00c9 importante salientar que os estudos mencionados est\u00e3o avaliando a seguran\u00e7a e a tolerabilidade do uso de c\u00e9lulas-tronco adultas em ELA e est\u00e3o na etapa final dessa fase (Fase I) Caso se confirmem os resultados, provavelmente ter\u00e3o inicio os estudos FASE II, onde um maior n\u00famero de pacientes poder\u00e1 ser avaliado. Cremos ser este o momento exato de se discutir a viabilidade de se fazer um bra\u00e7o desses estudos FASE II tamb\u00e9m no Brasil. Em outras palavras: a hora \u00e9 agora!<\/p>\n<p>Pleiteamos ainda uma maior flexibiliza\u00e7\u00e3o nas hoje excessivamente r\u00edgidas regras relativas \u00e0 participa\u00e7\u00e3o em testes cl\u00ednicos de novas terapias e ao uso compassivo de drogas experimentais, a exemplo de discuss\u00f5es que j\u00e1 v\u00eam sendo travadas nos Estados Unidos. \u00c9 simples bom-senso: n\u00e3o faz sentido levantar obst\u00e1culos baseados em quest\u00f5es de \u201cseguran\u00e7a\u201d quando pacientes de ELA est\u00e3o morrendo diariamente. Para n\u00f3s, inseguro \u00e9 conviver com a ELA sem dispor de armas para lutar.<\/p>\n<p>A esse respeito, \u00e9 oportuno lembrar que Jonathan Emory Glass e Nick Boulis est\u00e3o argumentando que o atual sistema de controle est\u00e1 impedindo o avan\u00e7o na produ\u00e7\u00e3o de tratamentos para a Esclerose Lateral Amiotr\u00f3fica. Eles afirmam que os \u00f3rg\u00e3os reguladores, como a Food and Drug Administration, devem deixar que os pacientes assumam riscos maiores quando a alternativa \u00e9 a morte iminente. Glass resume: \u201cIsto \u00e9 uma emerg\u00eancia. A casa est\u00e1 pegando fogo\u00b2\u201d.<\/p>\n<p>Entendemos que, como s\u00e3o as nossas vidas que est\u00e3o em jogo, n\u00f3s, pacientes, mais do que ningu\u00e9m, devemos ser ouvidos quanto ao rumo a ser tomado nas pesquisas e testes cl\u00ednicos. N\u00e3o queremos ser tratados com condescend\u00eancia, ainda que carinhosa e bem-intencionada. Queremos deixar claro que somos perfeitamente capazes de tomar decis\u00f5es a respeito dos riscos que queremos assumir ao participar de testes cl\u00ednicos e ao fazer uso compassivo de drogas experimentais.<\/p>\n<p>ACESSE AQUI E ASSINE O MANIFESTO PELA VIDA DESSES PACIENTES.<\/p>\n<p>1 <a href=\"http:\/\/\" target=\"_blank\" rel=\"noopener\">http:\/\/falandosobreela.blogspot.com.br\/2012\/02\/ela-quase-dois-seculos-de-historia.html<\/a><br \/>\n\u00b2 <a href=\"http:\/\/falandosobreela.blogspot.com.br\/2012\/04\/casa-esta-pegando-fogo-por-nice-santos.html\" target=\"_blank\" rel=\"noopener\">http:\/\/falandosobreela.blogspot.com.br\/2012\/04\/casa-esta-pegando-fogo-por-nice-santos.html<\/a><\/p>\n<p>Assista o emocionante v\u00eddeo em que Luciano Szafir explica sobre a Esclerose Lateral Amiotr\u00f3fica:<\/p>\n<p><object classid=\"clsid:d27cdb6e-ae6d-11cf-96b8-444553540000\" width=\"425\" height=\"350\" codebase=\"http:\/\/download.macromedia.com\/pub\/shockwave\/cabs\/flash\/swflash.cab#version=6,0,40,0\"><param name=\"src\" value=\"http:\/\/www.youtube.com\/v\/476NEFl74Ng\" \/><embed type=\"application\/x-shockwave-flash\" width=\"425\" height=\"350\" src=\"http:\/\/www.youtube.com\/v\/476NEFl74Ng\"><\/embed><\/object><\/p>\n<p>Fonte: <a href=\"http:\/\/www.deficienteciente.com.br\/2012\/08\/abaixo-assinado-manifesto-pela-vida-dos-pacientes-com-esclerose-lateral-amiotrofica-assine-e-divulgue.html\" target=\"_blank\" rel=\"noopener\">Deficiente Ciente<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leia o manifesto, assine se julgar importante e ajude a divulgar o abaixo-assinado.<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"site-container-style":"default","site-container-layout":"default","site-sidebar-layout":"default","disable-article-header":"default","disable-site-header":"default","disable-site-footer":"default","disable-content-area-spacing":"default","footnotes":""},"categories":[3,38,11,4],"tags":[201],"class_list":["post-23267","post","type-post","status-publish","format-standard","hentry","category-campanhas","category-deficiencia","category-direitos-humanos","category-noticias","tag-ela"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Manifesto pela vida dos pacientes com Esclerose Lateral Amiotr\u00f3fica: assine e divulgue! 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