{"id":124559,"date":"2023-11-07T17:45:16","date_gmt":"2023-11-07T20:45:16","guid":{"rendered":"http:\/\/ww16.ce.gov.br\/saude\/?p=124559"},"modified":"2023-11-10T15:14:22","modified_gmt":"2023-11-10T18:14:22","slug":"hias-primeiro-ambulatorio-de-neurofibromatose-do-ceara","status":"publish","type":"post","link":"https:\/\/ww16.ce.gov.br\/saude\/2023\/11\/07\/hias-primeiro-ambulatorio-de-neurofibromatose-do-ceara\/","title":{"rendered":"Hias consolida primeiro ambulat\u00f3rio multiprofissional de neurofibromatose do Cear\u00e1"},"content":{"rendered":"<p style=\"text-align: center\"><em><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-124620\" src=\"https:\/\/ww16.ce.gov.br\/saude\/wp-content\/uploads\/sites\/64\/2023\/11\/Ambulatorio-neurofibromatose-hias-1-1-1-600x450.jpg\" alt=\"\" width=\"775\" height=\"581\" srcset=\"https:\/\/ww16.ce.gov.br\/saude\/wp-content\/uploads\/sites\/64\/2023\/11\/Ambulatorio-neurofibromatose-hias-1-1-1-600x450.jpg 600w, https:\/\/ww16.ce.gov.br\/saude\/wp-content\/uploads\/sites\/64\/2023\/11\/Ambulatorio-neurofibromatose-hias-1-1-1-1200x900.jpg 1200w, https:\/\/ww16.ce.gov.br\/saude\/wp-content\/uploads\/sites\/64\/2023\/11\/Ambulatorio-neurofibromatose-hias-1-1-1-768x576.jpg 768w, https:\/\/ww16.ce.gov.br\/saude\/wp-content\/uploads\/sites\/64\/2023\/11\/Ambulatorio-neurofibromatose-hias-1-1-1-1536x1152.jpg 1536w, https:\/\/ww16.ce.gov.br\/saude\/wp-content\/uploads\/sites\/64\/2023\/11\/Ambulatorio-neurofibromatose-hias-1-1-1.jpg 2048w\" sizes=\"auto, (max-width: 775px) 100vw, 775px\" \/>Pacientes com neurofibromatose, condi\u00e7\u00e3o rara com diagn\u00f3stico normalmente detectado na inf\u00e2ncia, s\u00e3o atendidos no ambulat\u00f3rio do Hias<\/em><\/p>\n<p style=\"text-align: justify\">O <strong>Hospital Infantil Albert Sabin (Hias)<\/strong>, unidade da <strong>Secretaria da Sa\u00fade do Cear\u00e1 (Sesa)<\/strong>, iniciou um novo tipo de atendimento ambulatorial especializado no diagn\u00f3stico, tratamento e acompanhamento personalizado de crian\u00e7as com <strong>neurofibromatose<\/strong>. Essa condi\u00e7\u00e3o rara se d\u00e1 por um grupo de doen\u00e7as provenientes de altera\u00e7\u00f5es gen\u00e9ticas que causam o aparecimento anormal de n\u00f3dulos no Sistema Nervoso Central, chamados de neurofibromas.<\/p>\n<p style=\"text-align: justify\">De acordo com o oncologista Helder Felix, o diagn\u00f3stico costuma acontecer durante o per\u00edodo da inf\u00e2ncia, sendo este o primeiro atendimento multiprofissional do Cear\u00e1 dedicado \u00e0 investiga\u00e7\u00e3o de neurofibromas. \u201cO principal foco desse ambulat\u00f3rio \u00e9 o tratamento especializado de pacientes que n\u00e3o precisam de quimioterapia, mas que t\u00eam tumores benignos que impactam a vida da crian\u00e7a de forma significativa. Para o diagn\u00f3stico, temos um checklist de crit\u00e9rios cl\u00ednicos: al\u00e9m das manchas conhecidas como &#8216;caf\u00e9 com leite&#8217;, tamb\u00e9m podemos investigar a presen\u00e7a de n\u00f3dulos e altera\u00e7\u00f5es na \u00edris. Em caso de d\u00favida, partimos para a an\u00e1lise gen\u00e9tica\u201d, explica o m\u00e9dico.<\/p>\n<p style=\"text-align: justify\">O servi\u00e7o especializado teve in\u00edcio no segundo semestre de 2023. O Hias, unidade pedi\u00e1trica refer\u00eancia no Norte e Nordeste para doen\u00e7as raras, atende, atualmente, cerca de 20 crian\u00e7as e adolescentes que contam com especialistas da neurologia, gen\u00e9tica, oncologia e oftalmologia por meio do Ambulat\u00f3rio de Especialidades.<\/p>\n<p style=\"text-align: center\"><em><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-124562\" src=\"https:\/\/ww16.ce.gov.br\/saude\/wp-content\/uploads\/sites\/64\/2023\/11\/Gustavo-e-familia-paciente-neurofibromatose-600x450.jpg\" alt=\"\" width=\"775\" height=\"581\" srcset=\"https:\/\/ww16.ce.gov.br\/saude\/wp-content\/uploads\/sites\/64\/2023\/11\/Gustavo-e-familia-paciente-neurofibromatose-600x450.jpg 600w, https:\/\/ww16.ce.gov.br\/saude\/wp-content\/uploads\/sites\/64\/2023\/11\/Gustavo-e-familia-paciente-neurofibromatose-1200x900.jpg 1200w, https:\/\/ww16.ce.gov.br\/saude\/wp-content\/uploads\/sites\/64\/2023\/11\/Gustavo-e-familia-paciente-neurofibromatose-768x576.jpg 768w, https:\/\/ww16.ce.gov.br\/saude\/wp-content\/uploads\/sites\/64\/2023\/11\/Gustavo-e-familia-paciente-neurofibromatose-1536x1152.jpg 1536w, https:\/\/ww16.ce.gov.br\/saude\/wp-content\/uploads\/sites\/64\/2023\/11\/Gustavo-e-familia-paciente-neurofibromatose.jpg 2048w\" sizes=\"auto, (max-width: 775px) 100vw, 775px\" \/>O pequeno Gustavo Fonseca, de oito anos, \u00e9 um dos pacientes acompanhados pelo ambulat\u00f3rio de neurofibromatose<\/em><\/p>\n<p style=\"text-align: justify\">O pequeno Gustavo Fonseca, de oito anos, \u00e9 um dos pacientes acompanhados pelo servi\u00e7o. Aos quatro meses, come\u00e7ou a ter convuls\u00f5es que, futuramente, fecharam o diagn\u00f3stico de esclerose tuberosa, dist\u00farbio heredit\u00e1rio que causa o desenvolvimento de n\u00f3dulos anormais no c\u00e9rebro. Hoje, no ambulat\u00f3rio de neurofibromatose, faz consultas regulares com os especialistas. \u201cAqui \u00e9 maravilhoso, tanto o acompanhamento, quanto o recebimento de medica\u00e7\u00f5es. Sempre voltamos para o retorno das consultas, que acontecem no tempo certo\u201d, afirmou Ana Elisa Eul\u00e1lio, m\u00e3e do paciente.<\/p>\n<h3 style=\"text-align: justify\">Saiba mais<\/h3>\n<p style=\"text-align: justify\">As pessoas com neurofibromatose, conforme a Lei Estadual 17.150 de 2019, t\u00eam garantidos os mesmos direitos e benef\u00edcios daqueles que possuem alguma forma de defici\u00eancia ou doen\u00e7a oncol\u00f3gica.<\/p>\n<p style=\"text-align: justify\">O ambulat\u00f3rio de neurofibromatose \u00e9 um servi\u00e7o interno do Hias e os primeiros atendimentos para pacientes com suspeita ou com diagn\u00f3stico desse conjunto de doen\u00e7as passa, primeiramente, por especialidades como gen\u00e9tica, neurologia e oncologia, via Central de Regula\u00e7\u00e3o do Estado.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Pacientes com neurofibromatose, condi\u00e7\u00e3o rara com diagn\u00f3stico normalmente detectado na inf\u00e2ncia, s\u00e3o atendidos no ambulat\u00f3rio do Hias O Hospital Infantil Albert Sabin (Hias), unidade da Secretaria da Sa\u00fade do Cear\u00e1 (Sesa), iniciou um novo tipo de atendimento ambulatorial especializado no diagn\u00f3stico, tratamento e acompanhamento personalizado de crian\u00e7as com neurofibromatose. Essa condi\u00e7\u00e3o rara se d\u00e1 por [&hellip;]<\/p>\n","protected":false},"author":767,"featured_media":124561,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"categories":[498],"tags":[2211,689,2125,4043],"class_list":["post-124559","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-hias","tag-doencas-raras","tag-hias","tag-hospital-infantil-albert-sabin","tag-neurofibromatose"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.9 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Hias consolida ambulat\u00f3rio de neurofibromatose do Cear\u00e1<\/title>\n<meta name=\"description\" content=\"O Hospital iniciou atendimento ambulatorial especializado no diagn\u00f3stico e tratamento personalizado de crian\u00e7as com a condi\u00e7\u00e3o.\" \/>\n<meta name=\"robots\" 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