{"id":8034,"date":"2025-01-20T13:44:06","date_gmt":"2025-01-20T18:44:06","guid":{"rendered":"https:\/\/loeysdietzcanada.org\/?p=8034"},"modified":"2025-01-20T13:58:15","modified_gmt":"2025-01-20T18:58:15","slug":"livret-de-preparation-aux-situations-durgence-pour-les-familles-atteintes-du-syndrome-de-loeys-dietz","status":"publish","type":"post","link":"https:\/\/loeysdietzcanada.org\/fr\/livret-de-preparation-aux-situations-durgence-pour-les-familles-atteintes-du-syndrome-de-loeys-dietz\/","title":{"rendered":"Livret de pr\u00e9paration aux situations d&#8217;urgence pour les familles atteintes du syndrome de Loeys-Dietz"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-post\" data-elementor-id=\"8034\" class=\"elementor elementor-8034 elementor-8025\" data-elementor-post-type=\"post\">\n\t\t\t\t\t\t<section data-particle_enable=\"false\" data-particle-mobile-disabled=\"false\" class=\"elementor-section elementor-top-section elementor-element elementor-element-ac21fcd elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"ac21fcd\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-8ce1b55\" data-id=\"8ce1b55\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-abe1510 elementor-widget elementor-widget-text-editor\" data-id=\"abe1510\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p style=\"font-weight: 400;\">Les urgences peuvent survenir au moment o\u00f9 l&#8217;on s&#8217;y attend le moins, en particulier pour les personnes vivant avec le syndrome de Loeys-Dietz (LDS) ou s&#8217;occupant d&#8217;une personne atteinte de cette maladie. Conscients des d\u00e9fis uniques associ\u00e9s \u00e0 cette maladie rare du tissu conjonctif, nous sommes ravis d&#8217;annoncer la publication d\u2019un <a href=\"https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2025\/01\/LDS-EMERGENCY-PREPAREDNESS_FR.pdf\" target=\"_blank\" rel=\"noopener\">nouveau livret d\u00e9taillant la pr\u00e9paration aux situations d&#8217;urgence<\/a>.<\/p><p style=\"font-weight: 400;\">Cette ressource est con\u00e7ue pour donner aux individus et aux familles des outils, des connaissances et des recommandations essentiels pour faire face \u00e0 d&#8217;\u00e9ventuelles urgences m\u00e9dicales. Que vous soyez un patient, un soignant ou un prestataire de soins de sant\u00e9, ce livret offre des informations pr\u00e9cieuses pour vous aider \u00e0 vous pr\u00e9parer.<\/p><h5 style=\"font-weight: 400;\"><strong>Que contient ce livret ?<\/strong><\/h5><p style=\"font-weight: 400;\">Ce livret couvre un large \u00e9ventail de sujets essentiels, s\u00e9lectionn\u00e9s avec soin pour r\u00e9pondre aux besoins sp\u00e9cifiques de la communaut\u00e9 SLD.<\/p><p><strong>1. Signes et sympt\u00f4mes d&#8217;une urgence<\/strong><\/p><p style=\"font-weight: 400;\">Reconna\u00eetre les signes avant-coureurs d&#8217;\u00e9v\u00e9nements m\u00e9dicaux graves peut sauver des vies. Cette section fournit des informations sur les complications potentielles, notamment :<\/p><ul><li>Rupture d&#8217;un organe creux<\/li><li>D\u00e9collement oculaire<\/li><li>Pneumothorax (affaissement du poumon)<\/li><li>Dissection<\/li><li>Diff\u00e9rences de sympt\u00f4mes selon le sexe biologique<\/li><li>An\u00e9vrismes r\u00e9currents<\/li><\/ul><p><strong>2. Autres situations urgentes<\/strong><\/p><p style=\"font-weight: 400;\">Le SLD augmente souvent le risque de complications telles que les fractures. Apprenez \u00e0 g\u00e9rer efficacement ces situations.<\/p><p><strong>3. Autres informations importantes pour les professionnels de la sant\u00e9<\/strong><\/p><p style=\"font-weight: 400;\">Il est essentiel que les prestataires de soins de sant\u00e9 disposent de connaissances sp\u00e9cifiques sur le SLD. Cette section met l&#8217;accent sur les points suivants :<\/p><ul style=\"font-weight: 400;\"><li>Les m\u00e9dicaments qui ne doivent pas \u00eatre prescrits<\/li><li>Pratiques diagnostiques<\/li><li>Strat\u00e9gies de signalement des patients<\/li><\/ul><p><strong>4. Pr\u00e9paration en cas d\u2019urgence<\/strong><\/p><p style=\"font-weight: 400;\">Conseils \u00e9tape par \u00e9tape pour cr\u00e9er un plan d&#8217;action d&#8217;urgence, y compris comment appeler \u00e0 l&#8217;aide, rassembler des informations m\u00e9dicales vitales et rester organis\u00e9 pendant les crises.<\/p><p style=\"font-weight: 400;\"><strong>5 &amp; 6. Pr\u00e9paration aux situations d&#8217;urgence ax\u00e9e sur la famille<\/strong><\/p><p style=\"font-weight: 400;\">Conseils personnalis\u00e9s pour les parents d&#8217;enfants d&#8217;\u00e2ge scolaire et d&#8217;enfants adultes poursuivant des \u00e9tudes postsecondaires.<\/p><p><strong>7. Dispositifs m\u00e9dicaux d&#8217;alerte portables<\/strong><\/p><p style=\"font-weight: 400;\">Explorer les options en mati\u00e8re de syst\u00e8mes d&#8217;alerte m\u00e9dicale, y compris les cartes d&#8217;identit\u00e9 universelles et les syst\u00e8mes d&#8217;alerte \u00e9lectroniques, afin de s&#8217;assurer que les informations m\u00e9dicales essentielles sont toujours accessibles.<\/p><p><strong>8. Directives anticip\u00e9es<\/strong><\/p><p style=\"font-weight: 400;\">Un guide pour l&#8217;\u00e9laboration de directives anticip\u00e9es afin de s&#8217;assurer que les souhaits du patient sont respect\u00e9s en cas d&#8217;urgence.<\/p><p><strong>9. Sensibilisation<\/strong><\/p><p style=\"font-weight: 400;\">Des outils innovants, tels que la <strong>lani\u00e8re Zebra<\/strong> et la <strong>carte d&#8217;urgence<\/strong>, pour am\u00e9liorer la reconnaissance et la compr\u00e9hension de la SLD par les premiers intervenants et d&#8217;autres personnes.<\/p><p><strong>10. Conseils d&#8217;experts<\/strong><\/p><p style=\"font-weight: 400;\">Conseils pratiques de m\u00e9decins, d&#8217;infirmi\u00e8res, de patients et de secouristes pour faire face aux situations d&#8217;urgence avec clart\u00e9 et sang-froid.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section data-particle_enable=\"false\" data-particle-mobile-disabled=\"false\" class=\"elementor-section elementor-top-section elementor-element elementor-element-e83c092 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"e83c092\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-fb57f3d\" data-id=\"fb57f3d\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-593aa96 elementor-widget elementor-widget-text-editor\" data-id=\"593aa96\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<h5 style=\"font-weight: 400;\"><strong>L&#8217;importance de ce livret <\/strong><\/h5><p style=\"font-weight: 400;\">Vivre avec le syndrome de Loeys-Dietz pr\u00e9sente des d\u00e9fis uniques, en particulier lorsque des urgences surviennent. Ce livret n&#8217;est pas seulement un guide, mais une bou\u00e9e de sauvetage pour aider les familles, les soignants et les professionnels de la sant\u00e9 \u00e0 collaborer efficacement dans les moments critiques. Bien qu&#8217;il ne remplace pas la relation avec un m\u00e9decin, il fournit aux lecteurs les connaissances essentielles pour prendre des d\u00e9cisions \u00e9clair\u00e9es et plaider en faveur de soins appropri\u00e9s.<\/p><h5 style=\"font-weight: 400;\"><strong>Comment acc\u00e9der au livret <\/strong><\/h5><p style=\"font-weight: 400;\"><a href=\"https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2025\/01\/LDS-EMERGENCY-PREPAREDNESS_FR.pdf\" target=\"_blank\" rel=\"noopener\">Le livret gratuit sur la pr\u00e9paration aux situations d&#8217;urgence est disponible ici.<\/a><\/p><p style=\"font-weight: 400;\">T\u00e9l\u00e9chargez-le, partagez-le et faites-en une ressource pour renforcer votre famille et votre communaut\u00e9.<\/p><p>Nous esp\u00e9rons que ce livret apportera la tranquillit\u00e9 d&#8217;esprit et la pr\u00e9paration \u00e0 toutes les personnes touch\u00e9es par la SLD.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-4391f74\" data-id=\"4391f74\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-5364ec7 elementor-widget elementor-widget-image\" data-id=\"5364ec7\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<a href=\"https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2025\/01\/LDS-EMERGENCY-PREPAREDNESS_FR.pdf\" target=\"_blank\">\n\t\t\t\t\t\t\t<img fetchpriority=\"high\" decoding=\"async\" width=\"791\" height=\"1024\" src=\"https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2025\/01\/FINAL-FR-COPY-LDS-EMERGENCY-PREPAREDNESS_FINAL-791x1024.jpg\" class=\"attachment-large size-large wp-image-8029\" alt=\"\" srcset=\"https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2025\/01\/FINAL-FR-COPY-LDS-EMERGENCY-PREPAREDNESS_FINAL-791x1024.jpg 791w, https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2025\/01\/FINAL-FR-COPY-LDS-EMERGENCY-PREPAREDNESS_FINAL-232x300.jpg 232w, https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2025\/01\/FINAL-FR-COPY-LDS-EMERGENCY-PREPAREDNESS_FINAL-768x994.jpg 768w, https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2025\/01\/FINAL-FR-COPY-LDS-EMERGENCY-PREPAREDNESS_FINAL-1187x1536.jpg 1187w, https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2025\/01\/FINAL-FR-COPY-LDS-EMERGENCY-PREPAREDNESS_FINAL.jpg 1545w\" sizes=\"(max-width: 791px) 100vw, 791px\" \/>\t\t\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section data-particle_enable=\"false\" data-particle-mobile-disabled=\"false\" class=\"elementor-section elementor-top-section elementor-element elementor-element-08483c0 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"08483c0\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-6a00999\" data-id=\"6a00999\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-0d8df60 elementor-widget elementor-widget-text-editor\" data-id=\"0d8df60\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<h5 style=\"font-weight: 400;\"><strong>Avis de non-responsabilit\u00e9 m\u00e9dicale<\/strong><\/h5><p style=\"font-weight: 400;\">Les renseignements fournis aux pr\u00e9sentes ont pour but de permettre aux personnes de prendre des d\u00e9cisions \u00e9clair\u00e9es. Elles ne remplacent toutefois pas la relation du lecteur avec son m\u00e9decin.<\/p><p style=\"font-weight: 400;\">Les renseignements pr\u00e9sent\u00e9s dans ce livret sont destin\u00e9s \u00e0 un usage g\u00e9n\u00e9ral uniquement. Veuillez consulter un professionnel des soins de la sant\u00e9 qualifi\u00e9 avant de prendre des d\u00e9cisions m\u00e9dicales.<\/p><p style=\"font-weight: 400;\">Cette ressource a fait l\u2019objet de recherches, d\u2019un examen et d\u2019un contr\u00f4le par des experts qui ont travaill\u00e9 avec rigueur pour s&#8217;assurer que les renseignements fournis sont exacts et fiables ; toutefois, nous ne pouvons garantir qu&#8217;ils sont exempts d&#8217;erreurs ou qu\u2019ils sont complets.<\/p><p style=\"font-weight: 400;\">La recherche sur le syndrome de Loeys-Dietz se poursuit.<\/p><p style=\"font-weight: 400;\">La Fondation du syndrome de Loeys-Dietz du Canada n&#8217;est pas responsable de la qualit\u00e9 des renseignements ou des services fournis par les organismes mentionn\u00e9s sur le site loeysdietzcanada.org\/fr, et n&#8217;approuve aucun service, produit, traitement ou th\u00e9rapie.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section data-particle_enable=\"false\" data-particle-mobile-disabled=\"false\" class=\"elementor-section elementor-top-section elementor-element elementor-element-1ac8c75 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"1ac8c75\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-7179487\" data-id=\"7179487\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-661770e elementor-widget elementor-widget-accordion\" data-id=\"661770e\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"accordion.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-accordion\">\n\t\t\t\t\t\t\t<div class=\"elementor-accordion-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-1071\" class=\"elementor-tab-title\" data-tab=\"1\" role=\"button\" aria-controls=\"elementor-tab-content-1071\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon elementor-accordion-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-closed\"><i class=\"fas fa-plus\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-opened\"><i class=\"fas fa-minus\"><\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-accordion-title\" tabindex=\"0\">Ressources<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t<div id=\"elementor-tab-content-1071\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"1\" role=\"region\" aria-labelledby=\"elementor-tab-title-1071\"><p style=\"font-weight: 400;\"><strong>De la Fondation du syndrome de Loeys-Dietz Canada :<\/strong><\/p><ul><li style=\"font-weight: 400;\"><a href=\"https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2024\/09\/FINAL_Fillable_LDSFC-Emergency-Alert-Card_May-16-2023.pdf\" target=\"_blank\" rel=\"noopener\">Carte d&#8217;urgence m\u00e9dicale<\/a> \u00a0<\/li><li style=\"font-weight: 400;\"><a href=\"https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2023\/12\/FINAL-FR-COPY-LDS-Family-Planning.pdf\" target=\"_blank\" rel=\"noopener\">La planification familiale avec SLD<\/a><\/li><li style=\"font-weight: 400;\"><a href=\"https:\/\/loeysdietzcanada.org\/wp-content\/uploads\/2022\/10\/FSLDC_Trousse-sur-le-syndrome-de-Loeys-Dietz-pour-lecole.pdf\" target=\"_blank\" rel=\"noopener\">Trousse sur le syndrome de Loeys-Dietz pour l\u2019\u00e9cole<\/a><\/li><\/ul><p style=\"font-weight: 400;\"><strong>Ressources de planification : <\/strong><\/p><ul><li style=\"font-weight: 400;\"><a href=\"https:\/\/ontariocaregiver.ca\/wp-content\/uploads\/2024\/02\/Healthcare-Journey-Binder-ENGLISH_FINAL-es.pdf\" target=\"_blank\" rel=\"noopener\">Classeur \u00ab My Health Care Journey \u00bb (Mon parcours de soins de sant\u00e9)<\/a><\/li><li style=\"font-weight: 400;\"><a href=\"http:\/\/eol.law.dal.ca\/?page_id=231\" target=\"_blank\" rel=\"noopener\">Droit et politique de la fin de vie au Canada<\/a><\/li><\/ul><p style=\"font-weight: 400;\"><strong>Ressources en mati\u00e8re de diagnostic :<\/strong><\/p><ul><li style=\"font-weight: 400;\"><a href=\"https:\/\/johnritterfoundation.org\/ritter-rules\/\" target=\"_blank\" rel=\"noopener\">R\u00e8gles de Ritter<\/a><\/li><\/ul><p style=\"font-weight: 400;\"><strong>Ressources en mati\u00e8re d&#8217;alerte m\u00e9dicale et de signalement :<\/strong><\/p><ul><li style=\"font-weight: 400;\"><a href=\"https:\/\/hit.healthsystem.virginia.edu\/index.cfm\/_api\/render\/file\/?fileID=E2F57A31-17A4-77A0-3EC55AE780DAB3CC&amp;fileEXT=.pdf\" target=\"_blank\" rel=\"noopener\">FYI Patient Flag<\/a><\/li><li style=\"font-weight: 400;\"><a href=\"https:\/\/canada.universalmedicalid.com\/\" target=\"_blank\" rel=\"noopener\">Identification m\u00e9dicale universelle<\/a><\/li><li style=\"font-weight: 400;\"><a href=\"https:\/\/shop.getmyid.com\/\" target=\"_blank\" rel=\"noopener\">MyID QR Code Products<\/a><\/li><li style=\"font-weight: 400;\"><a href=\"https:\/\/www.lifeassure.com\/\" target=\"_blank\" rel=\"noopener\">Life Assure<\/a><\/li><li style=\"font-weight: 400;\"><a href=\"https:\/\/www.telus.com\/en\/personal-health\/livingwell-companion\/livingwelldeal?&amp;cmp=KNC_HS_Google_&amp;SEM_CID=11908595029&amp;SEM_AG=112379211541&amp;SEM_KW=telus%20medical%20alert&amp;SEM_MT=b&amp;gclid=Cj0KCQiAg_KbBhDLARIsANx7wAy7TRMIJlg_DBaJISBfV__QJhtPQ7hjr16pJO0ulGUu_JM1_PZdBFAaAttgEALw_wcB&amp;gclsrc=aw.ds\" target=\"_blank\" rel=\"noopener\">LivingWell Companion<\/a><\/li><li style=\"font-weight: 400;\"><a href=\"https:\/\/www.caretrak.ca\/?gclid=Cj0KCQiAg_KbBhDLARIsANx7wAxQvXEp7NOwJAKMOoFhS_F0ACTmpcGOYGnn84wssykpD8A8KA2MaLUaAvtVEALw_wcB\" target=\"_blank\" rel=\"noopener\">Caretrak<\/a><\/li><\/ul><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<div class=\"elementor-accordion-item\">\n\t\t\t\t\t<div id=\"elementor-tab-title-1072\" class=\"elementor-tab-title\" data-tab=\"2\" role=\"button\" aria-controls=\"elementor-tab-content-1072\" aria-expanded=\"false\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon elementor-accordion-icon-left\" aria-hidden=\"true\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-closed\"><i class=\"fas fa-plus\"><\/i><\/span>\n\t\t\t\t\t\t\t\t<span class=\"elementor-accordion-icon-opened\"><i class=\"fas fa-minus\"><\/i><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-accordion-title\" tabindex=\"0\">R\u00e9f\u00e9rences <\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t<div id=\"elementor-tab-content-1072\" class=\"elementor-tab-content elementor-clearfix\" data-tab=\"2\" role=\"region\" aria-labelledby=\"elementor-tab-title-1072\"><p style=\"font-weight: 400;\">Bevans, M., &amp; Sternberg, E. M. (2012). Caregiving Burden, Stress, and Health Effects Among Family Caregivers of Adult Cancer Patients. <em>JAMA<\/em>, <em>307<\/em>(4), 398\u2013403. https:\/\/doi.org\/10.1001\/JAMA.2012.29<\/p><p style=\"font-weight: 400;\">Bhattacharyya, R., Swergold, N., &amp; Bethel, C. (2018). Congenital pericardioperitoneal hernia in a patient with Loeys-Dietz syndrome. <em>Journal of Pediatric Surgery Case Reports<\/em>, <em>32<\/em>, 41\u201342. https:\/\/doi.org\/10.1016\/J.EPSC.2018.01.013<\/p><p style=\"font-weight: 400;\">Boone, P. M., Scott, R. M., Marciniak, S. J., Henske, E. P., &amp; Raby, B. A. (2019). The genetics of pneumothorax. <em>American Journal of Respiratory and Critical Care Medicine<\/em>, <em>199<\/em>(11), 1344\u20131357. https:\/\/doi.org\/10.1164\/RCCM.201807-1212CI\/SUPPL_FILE\/DISCLOSURES.PDF<\/p><p style=\"font-weight: 400;\">Borke, J. (2021, January 12). <em>Collapsed Lung (Pneumothorax) <\/em>. PennMedicine. https:\/\/www.pennmedicine.org\/for-patients-and-visitors\/patient-information\/conditions-treated-a-to-z\/collapsed-lung-pneumothorax<\/p><p style=\"font-weight: 400;\">Caza, T. N., Mercedes, A., Stoppacher, R., &amp; Catanese, C. A. (2016). A Complex Case of Loeys-Dietz Syndrome: A Case Report and Review of the Literature. <em>Academic Forensic Pathology<\/em>, <em>6<\/em>(4), 731. https:\/\/doi.org\/10.23907\/2016.069<\/p><p style=\"font-weight: 400;\">Christian, H. (2019). Stress Fractures in Loeys-Dietz Syndrome. <em>International Archives of Orthopaedic Surgery<\/em>, <em>2<\/em>(1). https:\/\/doi.org\/10.23937\/2643-4016\/1710008<\/p><p style=\"font-weight: 400;\"><em>Detached retina (retinal detachment) &#8211; NHS<\/em>. (2020, December 16). National Health System. https:\/\/www.nhs.uk\/conditions\/detached-retina-retinal-detachment\/<\/p><p style=\"font-weight: 400;\">Erlinger, C. (2017, March 29). <em>Heart Attack: Men vs. Women<\/em>. The Heart Foundation. https:\/\/theheartfoundation.org\/2017\/03\/29\/heart-attack-men-vs-women\/<\/p><p style=\"font-weight: 400;\">(Fuhrhop et al., 2015)Fuhrhop, S. K., McElroy, M. J., Dietz, H. C., MacCarrick, G. L., &amp; Sponseller, P. D. (2015). High Prevalence of Cervical Deformity and Instability Requires Surveillance in Loeys-Dietz Syndrome. <em>The Journal of Bone and Joint Surgery. American Volume<\/em>, <em>97<\/em>(5), 411. https:\/\/doi.org\/10.2106\/JBJS.N.00680<\/p><p style=\"font-weight: 400;\"><em>Gastrointestinal Perforation<\/em>. (2022, November 7). Cleveland Clinic. https:\/\/my.clevelandclinic.org\/health\/diseases\/23478-gastrointestinal-perforation<\/p><p style=\"font-weight: 400;\">Guerrerio, A. L., Mateja, A., Rasooly, M., Levin, S., Magnani, A., Dempsey, C., MacCarrick, G., Dietz, H. C., Brittain, E., Boyce, A. M., &amp; Frischmeyer-Guerrerio, P. A. (2022). Predictors of low bone density and fracture risk in Loeys\u2013Dietz syndrome. <em>Genetics in Medicine<\/em>, <em>24<\/em>(2), 419\u2013429. https:\/\/doi.org\/10.1016\/j.gim.2021.10.002<\/p><p style=\"font-weight: 400;\"><em>Heart Attack Symptoms in Women<\/em>. (2015, July 31). American Heart Association. https:\/\/www.heart.org\/en\/health-topics\/heart-attack\/warning-signs-of-a-heart-attack\/heart-attack-symptoms-in-women<\/p><p style=\"font-weight: 400;\"><em>How to prepare for an emergency room visit<\/em>. (2022, May 17). HCA Florida Healthcare. https:\/\/www.hcafloridahealthcare.com\/healthy-living\/blog\/how-to-prepare-for-an-emergency-room-visit<\/p><p style=\"font-weight: 400;\">How to use FYI flags. (n.d.). Retrieved 18 December 2023, from https:\/\/hit.healthsystem.virginia.edu\/index.cfm\/_api\/render\/file\/?fileID=E2F57A31-17A4-77A0-3EC55AE780DAB3CC&amp;fileEXT=.pdf<\/p><p style=\"font-weight: 400;\">Isselbacher, E. M., Bonaca, M. P., Di Eusanio, M., Froehlich, J., Bassone, E., Sechtem, U., Pyeritz, R., Patel, H., Khoynezhad, A., Eckstein, H. H., Jondeau, G., Ramponi, F., Abbasi, M., Montgomery, D., Nienaber, C. A., Eagle, K., &amp; Lindsay, M. E. (2016). Recurrent Aortic Dissection: Observations from the International Registry of Aortic Dissection. <em>Circulation<\/em>, <em>134<\/em>(14), 1013\u20131024. https:\/\/doi.org\/10.1161\/CIRCULATIONAHA.115.019359<\/p><p style=\"font-weight: 400;\">Levy, D., Goyal, A., Grigorova, Y., Farci, F., &amp; Le, J. K. (2022). Aortic Dissection. <em>StatPearls<\/em>. https:\/\/www.ncbi.nlm.nih.gov\/books\/NBK441963\/<\/p><p style=\"font-weight: 400;\">Lobaton, G. O., Chen, Y. J., Jelin, E., &amp; Garcia, A. V. (2021). Unusual case of delayed congenital diaphragmatic hernia in Loeys-Dietz syndrome: a case report. <em>Journal of Surgical Case Reports<\/em>, <em>2021<\/em>(1), 1\u20133. https:\/\/doi.org\/10.1093\/JSCR\/RJAA604<\/p><p style=\"font-weight: 400;\">Loeys, B. L., &amp; Dietz, H. C. (2018). Loeys-Dietz Syndrome. <em>GeneReviews\u00ae<\/em>. https:\/\/www.ncbi.nlm.nih.gov\/books\/NBK1133\/<\/p><p style=\"font-weight: 400;\"><em>Loeys-Dietz Syndrome &#8211; Symptoms and Causes | Penn Medicine<\/em>. (n.d.). PennMedicine. Retrieved 26 October 2022, from https:\/\/www.pennmedicine.org\/for-patients-and-visitors\/patient-information\/conditions-treated-a-to-z\/loeys-dietz-syndrome<\/p><p style=\"font-weight: 400;\">Loeys-Dietz Syndrome Foundation School Packet. (n.d.). Retrieved 31 October 2023, from https:\/\/static1.squarespace.com\/static\/5be355670dbda39d591a525e\/t\/5d0fd508a66301000184bd68\/1561318666483\/LDS_School+Packet_05272019.pdf<\/p><p style=\"font-weight: 400;\">Lu, L., Liu, M., Sun, R. R., Zheng, Y., &amp; Zhang, P. (2015). Myocardial Infarction: Symptoms and Treatments. <em>Cell Biochemistry and Biophysics 2015 72:3<\/em>, <em>72<\/em>(3), 865\u2013867. https:\/\/doi.org\/10.1007\/S12013-015-0553-4<\/p><p style=\"font-weight: 400;\">Mayo Foundation for Medical Education and Research. (2021, August 6).\u00a0<em>Aortic dissection<\/em>. Mayo Clinic. https:\/\/www.mayoclinic.org\/diseases-conditions\/aortic-dissection\/symptoms-causes\/syc-20369496\u00a0<\/p><p style=\"font-weight: 400;\">MacCarrick, G., Black, J. H., Bowdin, S., El-Hamamsy, I., Frischmeyer-Guerrerio, P. A., Guerrerio, A. L., Sponseller, P. D., Loeys, B., &amp; Dietz, H. C. (2014). Loeys\u2013Dietz syndrome: a primer for diagnosis and management. <em>Genetics in Medicine<\/em>, <em>16<\/em>(8), 576. https:\/\/doi.org\/10.1038\/GIM.2014.11<\/p><p style=\"font-weight: 400;\">Nienaber, C. A., Fattori, R., Mehta, R. H., Richartz, B. M., Evangelista, A., Petzsch, M., Cooper, J. V., Januzzi, J. L., Ince, H., Sechtem, U., Bossone, E., Fang, J., Smith, D. E., Isselbacher, E. M., Pape, L. A., &amp; Eagle, K. A. (2004). Gender-Related Differences in Acute Aortic Dissection. <em>Circulation<\/em>, <em>109<\/em>(24), 3014\u20133021. https:\/\/doi.org\/10.1161\/01.CIR.0000130644.78677.2C<\/p><p style=\"font-weight: 400;\">Peicius, E., Blazeviciene, A., &amp; Kaminskas, R. (2017). Are advance directives helpful for good end of life decision making: a cross sectional survey of health professionals. <em>BMC Medical Ethics<\/em>, <em>18<\/em>(1), 1\u20137. https:\/\/doi.org\/10.1186\/S12910-017-0197-6\/TABLES\/4<\/p><p style=\"font-weight: 400;\"><em>Preparing for an Emergency Room Visit<\/em>. (n.d.). Memorial Care. Retrieved 2 November 2022, from https:\/\/www.memorialcare.org\/services\/emergency-care\/preparing-emergency-room-visit<\/p><p style=\"font-weight: 400;\">Research, C. for D. E. and. (2019). FDA warns about the increased risk of ruptures or tears in the aorta blood vessel with fluoroquinolone antibiotics in certain patients. FDA. https:\/\/www.fda.gov\/drugs\/drug-safety-and-availability\/fda-warns-about-increased-risk-ruptures-or-tears-aorta-blood-vessel-fluoroquinolone-antibiotics<\/p><p style=\"font-weight: 400;\"><em>Ritter Rules<\/em>. (n.d.). The John Ritter Foundtion for Aortic Health. Retrieved 22 November 2022, from https:\/\/johnritterfoundation.org\/your-aortic-health\/ritter-rules\/<\/p><p style=\"font-weight: 400;\"><em>Ruptured spleen<\/em>. (n.d.). Mayo Clinic. Retrieved 23 November 2022, from https:\/\/www.mayoclinic.org\/diseases-conditions\/ruptured-spleen\/symptoms-causes\/syc-20352317<\/p><p style=\"font-weight: 400;\"><em>Zebra Stripes Awareness Ribbon Meaning for Rare Disease and Gifts<\/em>. (2017, October 4). Awareness Gallery Art. https:\/\/awarenessgallery.com\/blog\/2017\/10\/04\/zebra-stripes-awareness-ribbon-meaning-for-rare-disease-and-gifts\/<\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>Les urgences peuvent survenir au moment o\u00f9 l&#8217;on s&#8217;y attend le moins, en particulier pour les personnes vivant avec le syndrome de Loeys-Dietz (LDS) ou s&#8217;occupant d&#8217;une personne atteinte de [&hellip;]<\/p>\n","protected":false},"author":4,"featured_media":8015,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false,"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"default","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"set","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"categories":[72],"tags":[],"class_list":["post-8034","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-education-fr"],"aioseo_notices":[],"_links":{"self":[{"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/posts\/8034","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/users\/4"}],"replies":[{"embeddable":true,"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/comments?post=8034"}],"version-history":[{"count":7,"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/posts\/8034\/revisions"}],"predecessor-version":[{"id":8041,"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/posts\/8034\/revisions\/8041"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/media\/8015"}],"wp:attachment":[{"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/media?parent=8034"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/categories?post=8034"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/loeysdietzcanada.org\/fr\/wp-json\/wp\/v2\/tags?post=8034"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}