{"id":19703,"date":"2011-05-31T10:39:11","date_gmt":"2011-05-31T13:39:11","guid":{"rendered":"http:\/\/www.inclusive.org.br\/?p=19703"},"modified":"2011-05-31T10:39:11","modified_gmt":"2011-05-31T13:39:11","slug":"pela-inclusao-de-deficiencia-de-biotinidase-no-teste-do-pezinho","status":"publish","type":"post","link":"https:\/\/inclusivenews.com.br\/?p=19703","title":{"rendered":"Pela Inclus\u00e3o da Defici\u00eancia de Biotinidase no Teste do Pezinho"},"content":{"rendered":"<p><strong> <\/strong><\/p>\n<figure id=\"attachment_19704\" aria-describedby=\"caption-attachment-19704\" style=\"width: 250px\" class=\"wp-caption alignleft\"><img loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-19704\" title=\"pezinho\" src=\"http:\/\/inclusivenews.com.br\/wp-content\/uploads\/pezinho.jpg\" alt=\"Ilustra\u00e7\u00e3o de m\u00e3os com luva segurando p\u00e9 de beb\u00ea e colhendo bolinhas de sangue numa tira de papel.\" width=\"250\" height=\"218\" \/><figcaption id=\"caption-attachment-19704\" class=\"wp-caption-text\">Ilustra\u00e7\u00e3o de m\u00e3os com luva segurando p\u00e9 de beb\u00ea e colhendo bolinhas de sangue numa tira de papel.<\/figcaption><\/figure>\n<p>Na pr\u00f3xima segunda-feira, dia 06 de junho, o Teste do Pezinho completa 10 anos e, para comemorar a data haver\u00e1 uma audi\u00eancia p\u00fablica no Senado. Um dos objetivos da audi\u00eancia \u00e9 a reivindica\u00e7\u00e3o da inclus\u00e3o do exame para detec\u00e7\u00e3o da doen\u00e7a metab\u00f3lica <strong>Defici\u00eancia da Biotinidase <\/strong>no teste do pezinho. V\u00e1rias fam\u00edlias com filhos que t\u00eam a defici\u00eancia estar\u00e3o em Bras\u00edlia para o evento. \u00c9 necess\u00e1rio mostrar como \u00e9 importante o teste para os rec\u00e9m nascidos.<\/p>\n<p>O teste pode ser realizado na rede particular de sa\u00fade mas a maioria da popula\u00e7\u00e3o n\u00e3o tem esta oportunidade. \u00c9 por estas crian\u00e7as que ainda est\u00e3o por vir que se precisa lutar.<\/p>\n<p>Atualmente o teste do pezinho oferecido pelo SUS detecta, na fase 1, a fenilceton\u00faria e o hipotireoidismo cong\u00eanito; na fase 2, a fenilceton\u00faria, o hipotireoidismo cong\u00eanito, doen\u00e7as falciformes e outras hemoglobinopatias; e, na fase 3 (feita apenas em quatro estados), a fenilceton\u00faria, o hipotireoidismo cong\u00eanito, as doen\u00e7as falciformes, outras hemoglobinopatias e a fibrose c\u00edstica.<\/p>\n<p>Com R$ 0,50 a mais por teste, o SUS poder\u00e1 incluir o diagn\u00f3stico da biotinidase. \u201cO diagn\u00f3stico precoce, no primeiro m\u00eas de vida, faz com que a crian\u00e7a n\u00e3o desenvolva nenhum sintoma da doen\u00e7a. Caso contr\u00e1rio, eles come\u00e7am a aparecer entre os 3 e 6 meses de idade\u201d, diz o m\u00e9dico e pesquisador norte-americano Barry Wolf, que descobriu a biotinidase em 1982. De origem gen\u00e9tica e causada pela falta de produ\u00e7\u00e3o no organismo de uma enzima essencial ao funcionamento do metabolismo, quando n\u00e3o tratada, a doen\u00e7a provoca problemas de pele, surdez, convuls\u00f5es, coma e pode levar \u00e0 morte.<\/p>\n<p>Uma pesquisa realizada por um laborat\u00f3rio do Rio Grande do Sul indicou que a incid\u00eancia da biotinidase entre brasileiros \u00e9 de um caso em cada 17 mil nascidos. Nos Estados Unidos, a taxa \u00e9 de 1\/60 mil.<\/p>\n<p>Tira-D\u00favidas<\/p>\n<p>1) O que \u00e9 Defici\u00eancia da biotinidase?<\/p>\n<p>\u00c9 uma doen\u00e7a gen\u00e9tica na qual o organismo n\u00e3o produz uma enzima chamada biotinidase. Essa enzima \u00e9 respons\u00e1vel por captar a biotina dos alimentos, enzima essencial para o funcionamento do metabolismo.<\/p>\n<p>2) Tem cura?<\/p>\n<p>N\u00e3o, mas pode ser tratada. O diagn\u00f3stico deve ser precoce para que a crian\u00e7a n\u00e3o sofra com os sintomas.<\/p>\n<p>3) Quando n\u00e3o tratada, o que pode causar?<\/p>\n<p>Problemas irrevers\u00edveis, como surdez, retardo mental e cegueira. Tamb\u00e9m pode levar \u00e0 morte.<\/p>\n<p>4) Como \u00e9 feito o diagn\u00f3stico precoce?<\/p>\n<p>Por meio do teste do pezinho. A rede p\u00fablica ainda n\u00e3o realiza o diagn\u00f3stico, que deve ser feito em laborat\u00f3rios particulares.<\/p>\n<p>5) Quais s\u00e3o as outras doen\u00e7as que podem ser detectadas com o teste do pezinho?<\/p>\n<p>No teste b\u00e1sico ou tradicional s\u00e3o pesquisadas duas doen\u00e7as, o hipotireoidismo e a fenilceton\u00faria. A primeira refere-se a um mau funcionamento da gl\u00e2ndula tire\u00f3ide (que fica no pesco\u00e7o). Na segunda, o organismo da crian\u00e7a n\u00e3o consegue aproveitar uma subst\u00e2ncia chamada fenilalanina, presente em muitos alimentos.<\/p>\n<p><strong>Dia 06 de Junho o Senado Federal comemora o Dia Nacional do Teste do Pezinho com uma audi\u00eancia publica na Comiss\u00e3o de Direitos Humanos.<br \/>\nSegunda feira: 06 de Abril.<br \/>\nAs 9:00 horas da manh\u00e3.<br \/>\nPlen\u00e1rio 2 da Ala Senador Nilo Coelho<br \/>\nAnexo 2 do Senado &#8211; entrada pela biblioteca \u00e9 mais f\u00e1cil o acesso.<\/strong><\/p>\n<p>A Sociedade Civil estar\u00e1 levando reivindica\u00e7\u00f5es pela real universaliza\u00e7\u00e3o do Teste do Pezinho e pela incorpora\u00e7\u00e3o de outras doen\u00e7as.<\/p>\n<p>A sua presen\u00e7a ser\u00e1 muito importante!<\/p>\n<p>Fonte &#8211; Sa\u00fade em Destaque<\/p>\n","protected":false},"excerpt":{"rendered":"<p>De origem gen\u00e9tica, quando n\u00e3o tratada a doen\u00e7a provoca problemas de pele, surdez, convuls\u00f5es, coma e pode levar \u00e0 morte.<\/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":[38,4,37],"tags":[],"class_list":["post-19703","post","type-post","status-publish","format-standard","hentry","category-deficiencia","category-noticias","category-saude"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Pela Inclus\u00e3o da Defici\u00eancia de Biotinidase no Teste do Pezinho -<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" 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