{"id":587,"date":"2026-01-21T11:37:38","date_gmt":"2026-01-21T14:37:38","guid":{"rendered":"https:\/\/saude.novartis.com.br\/atrofia-muscular-espinhal-ame\/?p=587"},"modified":"2026-01-22T15:21:46","modified_gmt":"2026-01-22T18:21:46","slug":"passo-a-passo-apos-o-diagnostico","status":"publish","type":"post","link":"https:\/\/saude.novartis.com.br\/atrofia-muscular-espinhal-ame\/passo-a-passo-apos-o-diagnostico\/","title":{"rendered":"Passo a passo ap\u00f3s o diagn\u00f3stico"},"content":{"rendered":"\n<div style=\"background-color: #3192dc; padding-bottom: 0px; \">\n<div class=\"row text-center\" style=\"padding: 50px 10px 10px 10px;\">\n<h2 style=\"color: #fff; padding: 0px 15px;\">Voc\u00ea j\u00e1 sabe que seu filho(a) tem AME. E agora? <\/h2>\n<p style=\"font-size: 1.2em; color: #fff;\">Veja um passo a passo pr\u00e1tico, acolhedor e baseado em fontes confi\u00e1veis para orientar voc\u00ea nesse in\u00edcio de jornada.  <\/p>\n<\/p><\/div>\n<p>               <!-- botao -->        <\/p>\n<div class=\"row\" style=\"padding: 20px 10px;\">\n<div class=\"col-md-4\"><\/div>\n<div class=\"col-md-4\">\n                   <a href=\"https:\/\/saude.novartis.com.br\/atrofia-muscular-espinhal-ame\/guia-completo-sobre-a-ame\/\" target=\"_self\" rel=\"noopener\"><\/p>\n<div class=\"text-center\" style=\"font-size: 18px;font-weight: 500;background-color: #0460a9;border-radius: 30px 30px 30px 30px;padding: 15px 20px;color: #ffffff;\">Guia para pais<\/div>\n<p><\/a>\n                    <\/div>\n<div class=\"col-md-4\"><\/div>\n<\/p><\/div>\n<p>                <!-- botao -->\n    <\/div>\n<p><!-- DIV BRANCA ++++++++++++++++++++++++++++++++ --> <\/p>\n<div style=\"background-color: #f9f9f9; padding: 10px 30px; \">\n<div class=\"row\" style=\"padding: 50px 10px 50px 10px;\">\n<div class=\"col-md-6\" style=\"padding: 25px 50px; \">\n               <img decoding=\"async\" src=\"https:\/\/saude.novartis.com.br\/atrofia-muscular-espinhal-ame\/wp-content\/uploads\/sites\/29\/2026\/01\/img04-guia-passos-1informacoes.png\" style=\"max-width: 100px;\" \/><\/p>\n<p> <span style=\"color:#0078d4; font-size: 1.3em; font-weight: bold; line-height: 1.1em; \">Informa\u00e7\u00f5es certas<\/span><\/p>\n<p >\n<ul type=\"disc\" style=\"color:#000; font-size: 1.1em; line-height: 1.1em;\">\n<li>Procure entender o que \u00e9 a AME. <\/li>\n<\/ul>\n<p >\n<ul type=\"disc\" style=\"color:#000; font-size: 1.1em; line-height: 1.1em;\">\n<li>Converse com m\u00e9dicos especialistas (neuropediatra, neurologista ou geneticista). <\/li>\n<\/ul>\n<\/p><\/div>\n<div class=\"col-md-6\" style=\"padding: 25px 50px; \">\n               <img decoding=\"async\" src=\"https:\/\/saude.novartis.com.br\/atrofia-muscular-espinhal-ame\/wp-content\/uploads\/sites\/29\/2026\/01\/img04-guia-passos-2apoio.png\" style=\"max-width: 100px;\" \/><\/p>\n<p> <span style=\"color:#0078d4; font-size: 1.3em; font-weight: bold; line-height: 1.1em; \">Rede de apoio <\/span><\/p>\n<p >\n<ul type=\"disc\" style=\"color:#000; font-size: 1.1em; line-height: 1.1em;\">\n<li>Compartilhe o diagn\u00f3stico e busque acolhimento emocional. <\/li>\n<\/ul>\n<p >\n<ul type=\"disc\" style=\"color:#000; font-size: 1.1em; line-height: 1.1em;\">\n<li>Procure grupos de apoio, associa\u00e7\u00f5es de pacientes e ONGs especializadas em AME. <\/li>\n<\/ul>\n<\/p><\/div>\n<\/p><\/div>\n<div class=\"row\">\n<div class=\"col-md-6\" style=\"padding: 25px 50px; \">\n               <img decoding=\"async\" src=\"https:\/\/saude.novartis.com.br\/atrofia-muscular-espinhal-ame\/wp-content\/uploads\/sites\/29\/2026\/01\/img04-guia-passos-3acompanhamento.png\" style=\"max-width: 100px;\" \/><\/p>\n<p> <span style=\"color:#0078d4; font-size: 1.3em; font-weight: bold; line-height: 1.1em; \">Acompanhamento m\u00e9dico <\/span><\/p>\n<p >\n<ul type=\"disc\" style=\"color:#000; font-size: 1.1em; line-height: 1.1em;\">\n<li>Agende consultas regulares com o especialista respons\u00e1vel pelo caso do seu filho(a). <\/li>\n<\/ul>\n<p >\n<ul type=\"disc\" style=\"color:#000; font-size: 1.1em; line-height: 1.1em;\">\n<li>Mantenha um acompanhamento multidisciplinar, conforme orienta\u00e7\u00e3o m\u00e9dica. <\/li>\n<\/ul>\n<p >\n<ul type=\"disc\" style=\"color:#000; font-size: 1.1em; line-height: 1.1em;\">\n<li>Juntos, elaborem um plano de interven\u00e7\u00e3o individualizado. <\/li>\n<\/ul>\n<\/p><\/div>\n<div class=\"col-md-6\" style=\"padding: 25px 50px; \">\n               <img decoding=\"async\" src=\"https:\/\/saude.novartis.com.br\/atrofia-muscular-espinhal-ame\/wp-content\/uploads\/sites\/29\/2026\/01\/img04-guia-passos-4acesso.png\" style=\"max-width: 100px;\" \/><\/p>\n<p> <span style=\"color:#0078d4; font-size: 1.3em; font-weight: bold; line-height: 1.1em; \">Acesso ao tratamento <\/span><\/p>\n<p >\n<ul type=\"disc\" style=\"color:#000; font-size: 1.1em; line-height: 1.1em;\">\n<li>Re\u00fana os documentos necess\u00e1rios para solicitar o tratamento pelo SUS ou plano de sa\u00fade. <\/li>\n<\/ul>\n<p >\n<ul type=\"disc\" style=\"color:#000; font-size: 1.1em; line-height: 1.1em;\">\n<li>Siga as orienta\u00e7\u00f5es do m\u00e9dico e da equipe de sa\u00fade para encaminhar esses documentos conforme o protocolo do seu estado ou munic\u00edpio.  <\/li>\n<\/ul>\n<\/p><\/div>\n<\/p><\/div>\n<div class=\"row\">\n<div class=\"col-md-6\" style=\"padding: 25px 50px; \">\n               <img decoding=\"async\" src=\"https:\/\/saude.novartis.com.br\/atrofia-muscular-espinhal-ame\/wp-content\/uploads\/sites\/29\/2026\/01\/img04-guia-passos-5genetica.png\" style=\"max-width: 100px;\" \/><\/p>\n<p> <span style=\"color:#0078d4; font-size: 1.3em; font-weight: bold; line-height: 1.1em; \">Aconselhamento gen\u00e9tico <\/span><\/p>\n<p >\n<ul type=\"disc\" style=\"color:#000; font-size: 1.1em; line-height: 1.1em;\">\n<li>Marque consulta com um geneticista para entender as causas heredit\u00e1rias da AME e avaliar o risco para outros membros da fam\u00edlia. <\/li>\n<\/ul>\n<p >\n<ul type=\"disc\" style=\"color:#000; font-size: 1.1em; line-height: 1.1em;\">\n<li>O aconselhamento gen\u00e9tico oferece informa\u00e7\u00f5es importantes para o planejamento familiar. <\/li>\n<\/ul>\n<\/p><\/div>\n<div class=\"col-md-6\" style=\"padding: 25px 50px; \">\n               <img decoding=\"async\" src=\"https:\/\/saude.novartis.com.br\/atrofia-muscular-espinhal-ame\/wp-content\/uploads\/sites\/29\/2026\/01\/img04-guia-passos-6rotina.png\" style=\"max-width: 100px;\" \/><\/p>\n<p> <span style=\"color:#0078d4; font-size: 1.3em; font-weight: bold; line-height: 1.1em; \">Rotina familiar <\/span><\/p>\n<p >\n<ul type=\"disc\" style=\"color:#000; font-size: 1.1em; line-height: 1.1em;\">\n<li>Prepare-se para mudan\u00e7as na rotina, adapta\u00e7\u00f5es em casa, transporte e atividades di\u00e1rias. <\/li>\n<\/ul>\n<p >\n<ul type=\"disc\" style=\"color:#000; font-size: 1.1em; line-height: 1.1em;\">\n<li>Esteja atento \u00e0s necessidades do seu filho(a) e mantenha o di\u00e1logo com os profissionais de sa\u00fade para ajustar os cuidados sempre que necess\u00e1rio.  <\/li>\n<\/ul>\n<\/p><\/div>\n<\/p><\/div>\n<div class=\"row\">\n<div class=\"col-md-6\" style=\"padding: 25px 50px; \">\n               <img decoding=\"async\" src=\"https:\/\/saude.novartis.com.br\/atrofia-muscular-espinhal-ame\/wp-content\/uploads\/sites\/29\/2026\/01\/img04-guia-passos-7emocional.png\" style=\"max-width: 100px;\" \/><\/p>\n<p> <span style=\"color:#0078d4; font-size: 1.3em; font-weight: bold; line-height: 1.1em; \">Sa\u00fade emocional <\/span><\/p>\n<p >\n<ul type=\"disc\" style=\"color:#000; font-size: 1.1em; line-height: 1.1em;\">\n<li>Permita-se sentir e compartilhar emo\u00e7\u00f5es, voc\u00ea n\u00e3o est\u00e1 sozinho. <\/li>\n<\/ul>\n<p >\n<ul type=\"disc\" style=\"color:#000; font-size: 1.1em; line-height: 1.1em;\">\n<li>Busque apoio psicol\u00f3gico para toda a fam\u00edlia e mantenha-se conectado \u00e0s redes de apoio e profissionais de confian\u00e7a. <\/li>\n<\/ul>\n<\/p><\/div>\n<div class=\"col-md-6\" style=\"padding: 25px 50px; \">\n               <img decoding=\"async\" src=\"https:\/\/saude.novartis.com.br\/atrofia-muscular-espinhal-ame\/wp-content\/uploads\/sites\/29\/2026\/01\/img04-guia-passos-8olharatento.png\" style=\"max-width: 100px;\" \/><\/p>\n<p> <span style=\"color:#0078d4; font-size: 1.3em; font-weight: bold; line-height: 1.1em; \">Olhar atento <\/span><\/p>\n<p >\n<ul type=\"disc\" style=\"color:#000; font-size: 1.1em; line-height: 1.1em;\">\n<li>Observe o desenvolvimento do seu filho(a) e comunique qualquer mudan\u00e7a ou sintoma novo \u00e0 equipe m\u00e9dica. <\/li>\n<\/ul>\n<p >\n<ul type=\"disc\" style=\"color:#000; font-size: 1.1em; line-height: 1.1em;\">\n<li>O acompanhamento cont\u00ednuo \u00e9 essencial para garantir interven\u00e7\u00f5es r\u00e1pidas e eficazes. <\/li>\n<\/ul>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<p><!-- fim DIV BRANCA ++++++++++++++++++++++++++++++++ -->        <\/p>\n<div class=\"row text-center\" style=\"padding: 20px 10px 20px 10px;\">\n                <!-- botao -->        <\/p>\n<div class=\"row text-center\">\n<div class=\"col-sm-4\"><\/div>\n<div class=\"col-sm-4\" style=\"padding: 10px 20px; \">\n                   <a href=\"https:\/\/saude.novartis.com.br\/atrofia-muscular-espinhal-ame\/guia-completo-sobre-a-ame\/\" target=\"_self\" rel=\"noopener\"><\/p>\n<div class=\"text-center\" style=\"font-size: 1.3em;font-weight: bold;background-color: #ff585d;border-radius: 50px;padding: 15px 30px;color: #ffffff;\">Baixe o e-book e saiba mais <\/div>\n<p><\/a>\n                    <\/div>\n<div class=\"col-sm-4\"><\/div>\n<\/p><\/div>\n<p>                <!-- botao -->\n    <\/div>\n<p><!-- DIV AZUL ++++++++++++++++++++++++++++++++ -->           <\/p>\n<div style=\"background-color: #d1e7f7; padding-bottom: 0px; background-image: url(https:\/\/saude.novartis.com.br\/atrofia-muscular-espinhal-ame\/wp-content\/uploads\/sites\/29\/2026\/01\/bg-celeste-linehearts.png); background-position: center top; background-repeat: repeat-y; \">\n<div class=\"container\" style=\"padding: 50px 10px 50px 10px;\">\n<div class=\"row\">\n<div class=\"col-md-4\"> <\/div>\n<div class=\"col-md-4 text-center\">\n<p> <span style=\"color:#3493dd; font-size: 2.5em; font-weight: bold; line-height: 1.1em; \">Saiba mais<\/span> <\/p>\n<\/div>\n<div class=\"col-md-4\"> <\/div>\n<\/p><\/div>\n<div class=\"row\">\n<div class=\"col-md-4\"> <\/div>\n<div class=\"col-md-4\" style=\"padding: 20px 40px;\">\n             <a href=\"https:\/\/saude.novartis.com.br\/atrofia-muscular-espinhal-ame\/rede-de-apoio-em-ame-saiba-onde-buscar-ajuda\/\" target=\"_self\" class=\"link-cardbox\" rel=\"noopener\"><\/p>\n<div class=\"card\" style=\"border-radius: 15px; border: 1px solid #ccc; background-color: #fff;\">\n                <img decoding=\"async\" class=\"card-img-top\" src=\"https:\/\/saude.novartis.com.br\/atrofia-muscular-espinhal-ame\/wp-content\/uploads\/sites\/29\/2024\/07\/post-ame-apoio.jpg\" alt=\"Card image cap\" style=\"border-radius: 15px 15px 0px 0px;\"><\/p>\n<div class=\"card-body\" style=\"padding: 20px 30px 50px 30px; \">\n<h4 class=\"card-title\">Rede de apoio em AME: saiba onde buscar ajuda<\/h4>\n<p class=\"card-text\">Para tornar mais f\u00e1cil a aceita\u00e7\u00e3o e a conviv\u00eancia com o diagn\u00f3stico da atrofia muscular espinhal, algumas&#8230; <\/p>\n<p>                   <!--\n\n\n                   <a href=\"#\" class=\"btn btn-primary\">Go somewhere<\/a> -->\n                <\/div>\n<\/p><\/div>\n<p><\/a><\/p>\n<div class=\"col-md-4\"> <\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<p><!-- fim DIV AZUL ++++++++++++++++++++++++++++++++ -->       <\/p>\n<p><!-- DIV CINZA ++++++++++++++++++++++++++++++++ -- >                             \n    \n\n<div style=\"background-color: #f2f2f2;\">  \n    \n\n<div class=\"container\" style=\"padding: 50px 10px 50px 10px;\"> \n       \n\n<div class=\"row text-left\">\n          \n\n<div class=\"col-md-12\">\n           \n\n<p><small> <b>Refer\u00eancias<\/b> <br \/>\n               1. \n\n           <\/small><\/p>\n\n\n            \n\n<hr>\n\n  \n           \n\n<p><small> \n               Material destinado ao p\u00fablico leigo. Este conte\u00fado tem car\u00e1ter informativo e n\u00e3o substitui avalia\u00e7\u00e3o m\u00e9dica. Procure sempre um especialista. <br \/>\n               2025 \u00a9 Direitos Reservados Novartis Bioci\u00eancias S\/A \u2013 Proibida a reprodu\u00e7\u00e3o total ou parcial sem autoriza\u00e7\u00e3o do titular. <br \/>\n               Atualizado em setembro\/2025. Veeva BR-35802\n\n           <\/small><\/p>\n\n              \n           \n           <\/div>\n\n\n       <\/div>\n\n\n    <\/div>\n\n\n    <\/div>\n\n\n      \n<!-- fim DIV CINZA ++++++++++++++++++++++++++++++++ -->       <\/p>\n<style>\n<p>    .img-fluid {\n        width: 100%;\n        height: auto;\n        margin: 0px;\n    }\n    .dt-footer {\n        margin-top: 0;\n    }<\/p>\n<p>\/*  \n@media (max-width: 450px) \n    .alinhamento{\n        order:2;\n    }\n}    \n.container-row {\n  display: grid;\n  \/* Cria 2 colunas de tamanho igual (1fr) * \/\n  grid-template-columns: 1fr 1fr; \n  gap: 10px; \/* Adiciona espa\u00e7o entre as divs * \/\n}    *\/<\/p>\n<p>\/*#grid {\n  display: grid;\n  width: 100%;\n  grid-template-columns: 1fr 1fr;\n  align-items: center;  \n  grid-column-gap: 10px;\n  grid-row-gap: 10px; <\/p>\n<p>} *\/<\/p>\n<p>a.link-cardbox {\n    text-decoration: none;\n    color: #333333;\n    }   <\/p>\n<p>.post-item {\n    background-color: #ffffff;\n    text-align: center!important;\n    padding: 10px;\n    border: 1px solid #ede0d7;\n    border-radius: 10px;<\/p>\n<p>    }    \n.container-box {\n    display: grid;\n    grid-template-columns: 1fr 1fr;\n    gap: 10px;\n    grid-row-gap: 10px;\n}<\/p>\n<p>@media (min-width: 1024px) {\n    .container-box {\n        grid-template-columns: 1fr 1fr 1fr 1fr 1fr 1fr;\n    }\n}     <\/p>\n<\/style>\n","protected":false},"excerpt":{"rendered":"<p>Voc\u00ea j\u00e1 sabe que seu filho(a) tem AME. E agora? Veja um passo a passo&#8230;<\/p>\n","protected":false},"author":2,"featured_media":561,"comment_status":"open","ping_status":"open","sticky":false,"template":"single-largura-total.php","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[2],"tags":[],"class_list":["post-587","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-diagnostico"],"acf":[],"_links":{"self":[{"href":"https:\/\/saude.novartis.com.br\/atrofia-muscular-espinhal-ame\/wp-json\/wp\/v2\/posts\/587","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/saude.novartis.com.br\/atrofia-muscular-espinhal-ame\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/saude.novartis.com.br\/atrofia-muscular-espinhal-ame\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/saude.novartis.com.br\/atrofia-muscular-espinhal-ame\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/saude.novartis.com.br\/atrofia-muscular-espinhal-ame\/wp-json\/wp\/v2\/comments?post=587"}],"version-history":[{"count":15,"href":"https:\/\/saude.novartis.com.br\/atrofia-muscular-espinhal-ame\/wp-json\/wp\/v2\/posts\/587\/revisions"}],"predecessor-version":[{"id":761,"href":"https:\/\/saude.novartis.com.br\/atrofia-muscular-espinhal-ame\/wp-json\/wp\/v2\/posts\/587\/revisions\/761"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/saude.novartis.com.br\/atrofia-muscular-espinhal-ame\/wp-json\/wp\/v2\/media\/561"}],"wp:attachment":[{"href":"https:\/\/saude.novartis.com.br\/atrofia-muscular-espinhal-ame\/wp-json\/wp\/v2\/media?parent=587"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/saude.novartis.com.br\/atrofia-muscular-espinhal-ame\/wp-json\/wp\/v2\/categories?post=587"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/saude.novartis.com.br\/atrofia-muscular-espinhal-ame\/wp-json\/wp\/v2\/tags?post=587"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}