{"id":21,"date":"2022-11-03T18:34:48","date_gmt":"2022-11-03T18:34:48","guid":{"rendered":"https:\/\/achdsehcp-dev-001.azurewebsites.net\/en-us\/achondroplasia\/?page_id=21"},"modified":"2025-08-26T22:44:34","modified_gmt":"2025-08-26T22:44:34","slug":"controlo","status":"publish","type":"page","link":"https:\/\/hcp.biomarin.com\/pt-pt\/achondroplasia\/controlo\/","title":{"rendered":"Management"},"content":{"rendered":"
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Os cuidados especializados proativos come\u00e7am consigo\n<\/h1>\n\t\t\t\t\t\t\t\t\t\t\t\t

Os pais, cuidadores e doentes poder\u00e3o precisar de fortes comunidades m\u00e9dicas desde o primeiro dia1<\/sup><\/p>\n\t\t\t\t\t\t\t\t\n

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Acondroplasia resulta em complica\u00e7\u00f5es multissist\u00e9micas <\/h2>\n

O manejo requer uma equipe multidisciplinar conhecedora das melhores pr\u00e1ticas em seu tratamento. Para garantir a coordena\u00e7\u00e3o dos cuidados, \u00e9 importante que os pais, cuidadores e pacientes tenham um especialista de confian\u00e7a no centro dos seus cuidados.1-5<\/sup><\/p>\n <\/div>\n\n

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Os especialistas de cl\u00ednica geral podem ajudar a coordenar uma abordagem multidisciplinar aos cuidados a receber\n<\/h2>\n\t\t\t\t\t\t \t\t\t\t\t\t \t\t\t\t\t\t

Dado que a acondroplasia origina complica\u00e7\u00f5es previs\u00edveis, definir as expectativas adequadas para um controlo de longa dura\u00e7\u00e3o\u2014incluindo a cria\u00e7\u00e3o de uma rede de cuidados dedicada\u2014\u00e9 essencial. Uma rede multidisciplinar de especialistas pode proporcionar recomenda\u00e7\u00f5es individualizadas para atenuar as complica\u00e7\u00f5es multissist\u00e9micas da acondroplasia.1<\/sup><\/p>\n\t\t\t\t\t\t \t\t\t\t\t <\/div>\n\t\t\t\t\t

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Descarregue o modelo de equipa de atendimento<\/a><\/p>\n <\/div>\n\t\t\t\t\t <\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>\n\n

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Um recurso para ajudar seus pacientes e seus cuidadores a se informarem<\/h3>\n

Achondroplasia.biomarin.com<\/a> \u00e9 um site dirigido para pacientes, projetado para ajudar os pacientes e seus cuidadores a aprender sobre a acondroplasia, seu manejo e os recursos dispon\u00edveis para eles, bem como para ver como diferentes fam\u00edlias apoiam, se adaptam e abra\u00e7am uma vida que \u00e9 exclusivamente sua.<\/p>\n

Visite achondroplasia.biomarin.com<\/a><\/p>\n <\/div>\n \t\t<\/div>\n\t<\/div>\n<\/div>\n\n

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Complica\u00e7\u00f5es da acondroplasia\n<\/h4>\n \n

Podemos esperar complica\u00e7\u00f5es frequentes durante a vida de um doente<\/p>\n \n <\/div>\n

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Saiba mais sobre as complica\u00e7\u00f5es da acondroplasia<\/a><\/p>\n <\/div>\n<\/div>\n\n

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Biblioteca\n<\/h4>\n \n

Tudo que voc\u00ea precisa para aprofundar seu conhecimento sobre acondroplasia<\/p>\n \n <\/div>\n

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Aceda fichas informativas e recursos sobre acondroplasia<\/a><\/p>\n <\/div>\n<\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>\n\n

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Teste seu conhecimento\n<\/h2>\n\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t

Por ser fator de risco para morte s\u00fabita, a compress\u00e3o cervicomedular deve ser monitorada atentamente em quais faixas et\u00e1rias?<\/p>\n\t\t\t\t\t\n

\n \n Crian\u00e7a (5-14) e Adulto (18+)\n <\/a>\n \n Beb\u00e9 (nascimento-2) e crian\u00e7a pequena (3-4)\n <\/a>\n \n Crian\u00e7a (5-14) e Adolescente (14-18)\n <\/a>\n \n Adolescente (14-18) e Adulto (18+)\n <\/a>\n <\/div>\n\t\t\t\t\t\n
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Enviar<\/a><\/p>\n <\/div>\n\t\t\t\t\t\t\t\t\t<\/div>\n\n\t\t\t\t

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Voc\u00ea escolheu: %choice%\n<\/p>\n\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t

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Correta!\n<\/h2>\n \n

N\u00e3o \u00e9 isso \u2013 a resposta correta \u00e9 %answer%\n<\/h2>\n \n

Os beb\u00e9s e as crian\u00e7as pequenas correm um risco aumentado de morte s\u00fabita<\/strong> devido \u00e0 compress\u00e3o cervicomedular no forame magno e as crian\u00e7as com acondroplasia enfrentam complica\u00e7\u00f5es m\u00fasculo-esquel\u00e9ticas, otorrinolaringol\u00f3gicas, neurol\u00f3gicas e espinhais \u2013 algumas das quais podem necessitar de cirurgia.1-3<\/sup><\/p>\n <\/div>\n

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\n Bibliograf\u00eda<\/a>\n <\/p>\n

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Fechar refer\u00eancias<\/a><\/p>\n

Bibliograf\u00eda:\n<\/h2>\n
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  1. Pauli RM. Achondroplasia: a comprehensive clinical review.\u202fOrphanet J Rare Dis. 2019;14(1):1. Published 2019 Jan 3. doi:10.1186\/s13023-018-0972-6.\n<\/span><\/li>\n
  2. Wynn J, King TM, Gambello MJ, Waller DK, Hecht JT. Mortality in achondroplasia study: a 42-year follow-up.\u202fAm J Med Genet A. 2007;143A(21):2502-2511. doi:10.1002\/ajmg.a.31919.\n<\/span><\/li>\n
  3. Ednick M, Tinkle BT, Phromchairak J, Egelhoff J, Amin R, Simakajornboon N. Sleep-related respiratory abnormalities and arousal pattern in achondroplasia during early infancy.\u202fJ Pediatr. 2009;155(4):510-515. doi:10.1016\/j.jpeds.2009.04.031.\n<\/span><\/li>\n <\/ol>\n <\/div>\n <\/div>\n\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t<\/div>\n <\/div>\n <\/div>\n<\/div>\n\n
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    Bibliograf\u00eda:\n<\/h4>\n\t\t\t\t\t\t
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    1. Hoover-Fong J, Scott CI, Jones MC; Committee on Genetics. Health supervision for people with achondroplasia. Pediatrics<\/em>. 2020;145(6):e20201010.\n<\/span><\/li>\n
    2. Ireland PJ, Pacey V, Zankl A, Edwards P, Johnston LM, Savarirayan R. Optimal management of complications associated with achondroplasia. Appl Clin Genet<\/em>em. 2014;7:117-125. Published online June 24, 2014. \n<\/span><\/li>\n
    3. Hunter AG, Bankier A, Rogers JG, Sillence D, Scott CI Jr. Medical complications of achondroplasia: a multicentre patient review. J Med Genet<\/em>. 1998;35(9):705-712. \n<\/span><\/li>\n
    4. Wright MJ, Irving MD. Clinical management of achondroplasia. Arch Dis Child<\/em>. 2012;97(2):129-134. \n<\/span><\/li>\n
    5. Unger S, Bonaf\u00e9 L, Gouze E. Current care and investigational therapies in achondroplasia. Curr Osteoporos Rep<\/em>. 2017;15(2):53-60.\n<\/span><\/li>\n <\/ol>\n\t\t\t\t\t<\/div>\n\t<\/div>\n<\/div>\n\n
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      Imprima esta p\u00e1gina<\/a><\/p>\n <\/div>\n <\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":2,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"class_list":["post-21","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"\nGrupos de Apoio, Gest\u00e3o e Cuidados com Acondroplasia<\/title>\n<meta name=\"description\" content=\"A acondroplasia leva a complica\u00e7\u00f5es, sendo essencial definir expectativas para a gest\u00e3o a longo prazo \u2013 incluindo a montagem de uma rede de cuidados participada.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/hcp.biomarin.com\/pt-pt\/achondroplasia\/controlo\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta 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