{"id":250200,"date":"2023-10-03T15:06:47","date_gmt":"2023-10-03T18:06:47","guid":{"rendered":"https:\/\/noticiaempauta.com\/portal\/?p=250200"},"modified":"2023-10-03T15:07:00","modified_gmt":"2023-10-03T18:07:00","slug":"deputado-dr-thales-recebe-comitiva-para-discutir-sobre-doenca-rara-no-piaui","status":"publish","type":"post","link":"https:\/\/noticiaempauta.com\/portal\/deputado-dr-thales-recebe-comitiva-para-discutir-sobre-doenca-rara-no-piaui\/","title":{"rendered":"Deputado Dr.Thales recebe comitiva para discutir\u00a0sobre doen\u00e7a\u00a0rara no Piau\u00ed"},"content":{"rendered":"\n<p>Na manh\u00e3 desta ter\u00e7a-feira (03), o Deputado Estadual Dr. Thales Coelho (PP) abriu as portas da Assembleia Legislativa do Piau\u00ed para receber uma comitiva multidisciplinar dedicada \u00e0 causa da Epiderm\u00f3lise Bolhosa (EB), uma doen\u00e7a rara e cong\u00eanita que afeta a pele, resultando na forma\u00e7\u00e3o de bolhas e feridas que requerem tratamento especializado.<\/p>\n\n\n\n<p>A comitiva era composta por Mairana Moura, presidente da Associa\u00e7\u00e3o Piauiense de Pessoas com EB, Sandra Marina, professora doutora da UESPI, Aryany Batista, enfermeira estomaterapeuta e Ana Carolina Ribeiro, paciente de EB.<\/p>\n\n\n\n<figure class=\"wp-block-image size-full\"><img fetchpriority=\"high\" decoding=\"async\" width=\"1024\" height=\"768\" src=\"https:\/\/noticiaempauta.com\/portal\/wp-content\/uploads\/2023\/10\/Imagem-do-WhatsApp-de-2023-10-03-as-12.03.20_a5b4c546-1024x768-1.jpg\" alt=\"\" class=\"wp-image-250205\" srcset=\"https:\/\/noticiaempauta.com\/portal\/wp-content\/uploads\/2023\/10\/Imagem-do-WhatsApp-de-2023-10-03-as-12.03.20_a5b4c546-1024x768-1.jpg 1024w, https:\/\/noticiaempauta.com\/portal\/wp-content\/uploads\/2023\/10\/Imagem-do-WhatsApp-de-2023-10-03-as-12.03.20_a5b4c546-1024x768-1-300x225.jpg 300w, https:\/\/noticiaempauta.com\/portal\/wp-content\/uploads\/2023\/10\/Imagem-do-WhatsApp-de-2023-10-03-as-12.03.20_a5b4c546-1024x768-1-768x576.jpg 768w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<p>A presidente da Associa\u00e7\u00e3o Piauiense de Pessoas com EB, Mairana Moura, enfatizou a import\u00e2ncia do encontro com o deputado Thales Coelho.<\/p>\n\n\n\n<figure class=\"wp-block-image size-full\"><img decoding=\"async\" width=\"1024\" height=\"772\" src=\"https:\/\/noticiaempauta.com\/portal\/wp-content\/uploads\/2023\/10\/Imagem-do-WhatsApp-de-2023-10-03-as-12.03.07_1f672476-1024x772-1.jpg\" alt=\"\" class=\"wp-image-250204\" srcset=\"https:\/\/noticiaempauta.com\/portal\/wp-content\/uploads\/2023\/10\/Imagem-do-WhatsApp-de-2023-10-03-as-12.03.07_1f672476-1024x772-1.jpg 1024w, https:\/\/noticiaempauta.com\/portal\/wp-content\/uploads\/2023\/10\/Imagem-do-WhatsApp-de-2023-10-03-as-12.03.07_1f672476-1024x772-1-300x226.jpg 300w, https:\/\/noticiaempauta.com\/portal\/wp-content\/uploads\/2023\/10\/Imagem-do-WhatsApp-de-2023-10-03-as-12.03.07_1f672476-1024x772-1-768x579.jpg 768w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<p>\u201cEsta \u00e9 a primeira vez que um deputado nos recebe e traz \u00e0 tona essa doen\u00e7a, temos uma grande necessidade de visibilidade e agradecemos ao deputado por nos ouvir e atender, pois at\u00e9 hoje n\u00e3o t\u00ednhamos nenhum representante nas institui\u00e7\u00f5es pol\u00edticas\u201d, destacou.<\/p>\n\n\n\n<p>Para a doutora especialista em estomaterapia, Sandra Marina, este encontro marca o in\u00edcio de uma nova era para as pessoas que vivem com a doen\u00e7a no Piau\u00ed.<\/p>\n\n\n\n<figure class=\"wp-block-image size-full\"><img decoding=\"async\" width=\"1024\" height=\"836\" src=\"https:\/\/noticiaempauta.com\/portal\/wp-content\/uploads\/2023\/10\/Imagem-do-WhatsApp-de-2023-10-03-as-12.02.56_a098e055-1024x836-1.jpg\" alt=\"\" class=\"wp-image-250203\" srcset=\"https:\/\/noticiaempauta.com\/portal\/wp-content\/uploads\/2023\/10\/Imagem-do-WhatsApp-de-2023-10-03-as-12.02.56_a098e055-1024x836-1.jpg 1024w, https:\/\/noticiaempauta.com\/portal\/wp-content\/uploads\/2023\/10\/Imagem-do-WhatsApp-de-2023-10-03-as-12.02.56_a098e055-1024x836-1-300x245.jpg 300w, https:\/\/noticiaempauta.com\/portal\/wp-content\/uploads\/2023\/10\/Imagem-do-WhatsApp-de-2023-10-03-as-12.02.56_a098e055-1024x836-1-768x627.jpg 768w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<p>\u201cA conversa de hoje foi muito produtiva, pois abre portas para projetos de lei e, principalmente, para aumentar o conhecimento p\u00fablico sobre essa doen\u00e7a rara que causa tanto sofrimento aos pacientes, agradecemos a oportunidade de trazer esse tema para a Assembleia Legislativa e confiamos no compromisso e na sensibilidade do deputado Thales, que tamb\u00e9m \u00e9 m\u00e9dico e conhece bem a doen\u00e7a\u201d, enfatizou.<\/p>\n\n\n\n<p>Na oportunidade, o Dr. Thales Coelho enfatizou a import\u00e2ncia da cria\u00e7\u00e3o do Programa Estadual de Assist\u00eancia Especializada em Epiderm\u00f3lise Bolhosa.<\/p>\n\n\n\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"744\" src=\"https:\/\/noticiaempauta.com\/portal\/wp-content\/uploads\/2023\/10\/Imagem-do-WhatsApp-de-2023-10-03-as-12.03.19_9bed4ebc-1024x744-1.jpg\" alt=\"\" class=\"wp-image-250202\" srcset=\"https:\/\/noticiaempauta.com\/portal\/wp-content\/uploads\/2023\/10\/Imagem-do-WhatsApp-de-2023-10-03-as-12.03.19_9bed4ebc-1024x744-1.jpg 1024w, https:\/\/noticiaempauta.com\/portal\/wp-content\/uploads\/2023\/10\/Imagem-do-WhatsApp-de-2023-10-03-as-12.03.19_9bed4ebc-1024x744-1-300x218.jpg 300w, https:\/\/noticiaempauta.com\/portal\/wp-content\/uploads\/2023\/10\/Imagem-do-WhatsApp-de-2023-10-03-as-12.03.19_9bed4ebc-1024x744-1-768x558.jpg 768w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<p>\u201cA partir do que discutimos hoje e ao conhecer as necessidades das pessoas afetadas por essa doen\u00e7a, j\u00e1 iniciamos a elabora\u00e7\u00e3o do Programa Estadual, que estabelecer\u00e1 diretrizes e direitos para o atendimento m\u00e9dico especializado aos pacientes. Al\u00e9m disso, buscamos o reconhecimento em Lei Estadual da import\u00e2ncia de discutir os tratamentos da EB. Acredito que, ao levar isso ao plen\u00e1rio, poderei contar com a colabora\u00e7\u00e3o dos demais deputados para aprovar leis que beneficiem essas pessoas.\u201d<\/p>\n\n\n\n<p>A Epiderm\u00f3lise Bolhosa \u00e9 uma condi\u00e7\u00e3o rara, mas a conscientiza\u00e7\u00e3o e o acesso ao tratamento adequado s\u00e3o cruciais para melhorar a qualidade de vida dos afetados por essa doen\u00e7a debilitante. O compromisso do Deputado Dr. Thales Coelho em liderar essa iniciativa \u00e9 um passo importante na dire\u00e7\u00e3o certa para a comunidade afetada pela&nbsp;EB&nbsp;no&nbsp;Piau\u00ed.<\/p>\n\n\n\n<p> <\/p>\n","protected":false},"excerpt":{"rendered":"<p>A Epiderm\u00f3lise Bolhosa \u00e9 uma doen\u00e7a autoimune que afeta a pele.<\/p>\n","protected":false},"author":2,"featured_media":250202,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_mi_skip_tracking":false,"footnotes":""},"categories":[25,1,5],"tags":[192],"class_list":["post-250200","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-destaques-site","category-geral","category-saude","tag-destaqueprincipal"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v19.2 (Yoast SEO v26.9) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Deputado Dr.Thales recebe comitiva para 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