{"id":6443,"date":"2023-02-28T05:00:05","date_gmt":"2023-02-28T09:00:05","guid":{"rendered":"http:\/\/blogdacondessa.com.br\/?p=6443"},"modified":"2023-02-27T16:54:53","modified_gmt":"2023-02-27T20:54:53","slug":"somos-todos-raros","status":"publish","type":"post","link":"https:\/\/blogdacondessa.com.br\/blog\/saude\/somos-todos-raros\/","title":{"rendered":"\u2018Somos Todos Raros\u2019"},"content":{"rendered":"<p>Aconteceu na segunda-feira (27\/02), no audit\u00f3rio Ana Maria do Couto, na C\u00e2mara de Cuiab\u00e1, o evento \u2018Somos Todos Raros\u2019, realizado pela Associa\u00e7\u00e3o de Pacientes com Doen\u00e7as Raras de Mato Grosso.<\/p>\n<p>O evento \u00e9 uma forma de discutir e ampliar o conhecimento da popula\u00e7\u00e3o sobre as doen\u00e7as que atingem 1 a cada 65 mil habitantes e s\u00e3o consideradas raras, conforme dados do Minist\u00e9rio da Sa\u00fade.<\/p>\n<p>A vereadora Michelly Alencar (Uni\u00e3o Brasil) participou do evento como m\u00e3e rara. A filha Esther, de 6 anos, foi diagnosticada com p\u00farpura, doen\u00e7a autoimune que se caracteriza pela destrui\u00e7\u00e3o das plaquetas, c\u00e9lulas produzidas na medula \u00f3ssea e ligadas ao processo de coagula\u00e7\u00e3o inicial do sangue, podendo ocasionar manchas pelo corpo e outras a\u00e7\u00f5es hemorr\u00e1gicas.<\/p>\n<p>\u201cSou m\u00e3e de uma crian\u00e7a rara e eu sei o que \u00e9 estar aqui lutando por esta causa. Eu sei o que \u00e9 demorar anos para ter um diagn\u00f3stico. Eu sei o que \u00e9 n\u00e3o saber quem procurar e as possibilidades de tratamento, n\u00e3o saber como fazer esse processo dentro do SUS\u201d, lembrou a vereadora.<\/p>\n<p>Michelly recordou do momento em que recebeu o diagn\u00f3stico da filha, as d\u00favidas e o medo pelo desconhecimento sobre a doen\u00e7a, que leva o nome \u201cp\u00farpura\u201d como refer\u00eancia \u00e0s manchas roxas ou avermelhadas indicativas de sangramentos que aparecem na pele.<\/p>\n<p>\u201cNunca ouvi falar dessa doen\u00e7a, nunca tinha relato na fam\u00edlia, na hist\u00f3ria da \u00e1rvore geneal\u00f3gica. Hoje eu entendo t\u00e3o claramente como \u00e9 necess\u00e1rio passar por algumas coisas para compreender na ess\u00eancia o que muitas vezes a gente acha que \u00e9 t\u00e3o irrelevante para outras pessoas porque n\u00e3o d\u00f3i na gente\u201d, refletiu.<\/p>\n<p>&nbsp;<\/p>\n<p>Hoje, Esther apresenta um quadro est\u00e1vel no tratamento, por\u00e9m exige um monitoramento constante por parte da fam\u00edlia. Por isso, a vereadora refor\u00e7ou a necessidade de falar sobre o assunto e lutar pela causa, para que um avan\u00e7o possa acontecer.<\/p>\n<p>\u201cQue chegue o dia que a gente n\u00e3o vai mais dizer o quanto \u00e9 dif\u00edcil n\u00e3o ter o atendimento, o diagn\u00f3stico e tudo aquilo que n\u00f3s precisamos para nossas crian\u00e7as, nossos jovens e para todos aqueles que s\u00e3o portadores, filhos, m\u00e3es ou aqueles que s\u00e3o de uma fam\u00edlia rara\u201d, afirmou.<\/p>\n<p>Ainda de acordo com o Minist\u00e9rio da Sa\u00fade, a estimativa \u00e9 de que existam mais 13 milh\u00f5es de pacientes com doen\u00e7as raras no Brasil, comparando com o censo de 2021 do Instituto Brasileiro de Geografia e Estat\u00edstica (IBGE).<\/p>\n<p>Vale lembrar ainda que nesta ter\u00e7a-feira (28) \u00e9 comemorado o Dia Mundial de Luta e Conscientiza\u00e7\u00e3o sobre Doen\u00e7as Raras.<\/p>\n<table>\n<tbody>\n<tr>\n<td width=\"44\">&nbsp;<\/td>\n<td width=\"922\">&nbsp;<\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Aconteceu na segunda-feira (27\/02), no audit\u00f3rio Ana Maria do Couto, na C\u00e2mara de Cuiab\u00e1, o evento \u2018Somos Todos Raros\u2019, realizado pela Associa\u00e7\u00e3o de Pacientes com Doen\u00e7as Raras de Mato Grosso. O evento \u00e9 uma forma de discutir e ampliar o conhecimento da popula\u00e7\u00e3o sobre as doen\u00e7as que atingem 1 a cada 65 mil habitantes e [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":6444,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"iawp_total_views":0,"footnotes":""},"categories":[5],"tags":[],"class_list":["post-6443","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-saude"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>\u2018Somos Todos Raros\u2019 &#8902; Blog da Condessa<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/blogdacondessa.com.br\/blog\/saude\/somos-todos-raros\/\" \/>\n<meta property=\"og:locale\" content=\"pt_BR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"\u2018Somos Todos Raros\u2019 &#8902; Blog da Condessa\" \/>\n<meta property=\"og:description\" content=\"Aconteceu na segunda-feira (27\/02), no audit\u00f3rio Ana Maria do Couto, na C\u00e2mara de Cuiab\u00e1, o evento \u2018Somos Todos Raros\u2019, realizado pela Associa\u00e7\u00e3o de Pacientes com Doen\u00e7as Raras de Mato Grosso. 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