{"id":1190672,"date":"2021-05-06T14:28:27","date_gmt":"2021-05-06T18:28:27","guid":{"rendered":"https:\/\/patientworthy.wpengine.com\/?p=1190672"},"modified":"2021-05-06T14:28:27","modified_gmt":"2021-05-06T18:28:27","slug":"la-connaissance-cest-le-pouvoir-comment-avery-allmond-a-exploite-son-diagnostic-nmosd-pour-de-bon","status":"publish","type":"post","link":"https:\/\/patientworthy.com\/fr\/2021\/05\/06\/la-connaissance-cest-le-pouvoir-comment-avery-allmond-a-exploite-son-diagnostic-nmosd-pour-de-bon\/","title":{"rendered":"La connaissance, c&rsquo;est le pouvoir: comment Avery Allmond a exploit\u00e9 son diagnostic NMOSD pour de bon"},"content":{"rendered":"<p><em><span class=\"TextRun Highlight SCXW19214758 BCX0\" lang=\"FR-FR\" xml:lang=\"FR-FR\" data-contrast=\"none\"><span class=\"NormalTextRun SCXW19214758 BCX0\">Tous les documents publi\u00e9s sur PatientWorthy.com sont r\u00e9dig\u00e9s en anglais. Pour la commodit\u00e9 de notre public non anglophone, les traductions de ces documents sont fournies par l\u2019interm\u00e9diaire d\u2019un logiciel de traduction automatique aliment\u00e9 par Google Translate. Toutes les traductions sont fournies en tant que telles, sans garantie d\u2019aucune sorte, explicite ou implicite, quant \u00e0 l\u2019exactitude, la fiabilit\u00e9 ou la justesse de la traduction. Certains contenus (tels que les images, les vid\u00e9os, le Flash, etc.) peuvent ne pas \u00eatre traduits avec pr\u00e9cision en raison des limitations du logiciel de traduction.\u202f<\/span><\/span><span class=\"TextRun Highlight SCXW19214758 BCX0\" lang=\"FR-FR\" xml:lang=\"FR-FR\" data-contrast=\"none\"><span class=\"ContextualSpellingAndGrammarError SCXW19214758 BCX0\">Veuillez vous<\/span><\/span><span class=\"TextRun Highlight SCXW19214758 BCX0\" lang=\"FR-FR\" xml:lang=\"FR-FR\" data-contrast=\"none\"><span class=\"NormalTextRun SCXW19214758 BCX0\">\u202fr\u00e9f\u00e9rer \u00e0 la version anglaise de PatientWorthy.com pour le texte officiel.<\/span><\/span><span class=\"TextRun Highlight SCXW19214758 BCX0\" lang=\"FR-FR\" xml:lang=\"FR-FR\" data-contrast=\"none\"><span class=\"NormalTextRun SCXW19214758 BCX0\">\u202f<\/span><\/span><\/em><\/p>\n<p><span data-contrast=\"none\">Dans la vie, nous sommes confront\u00e9s \u00e0 une vari\u00e9t\u00e9 d&rsquo;obstacles. Mais ce sont les choix que nous faisons face \u00e0 ces obstacles qui nous d\u00e9finissent et d\u00e9finissent notre h\u00e9ritage. Pour\u00a0<\/span><a href=\"https:\/\/www.youtube.com\/watch?v=pq2Q2xZi-WE\"><span data-contrast=\"none\">Avery\u00a0<\/span><span data-contrast=\"none\">Allmond<\/span><\/a><span data-contrast=\"none\">, elle s&rsquo;est une fois mise \u00e0 devenir une star de l&rsquo;athl\u00e9tisme. En 2017, elle avait 19 ans, \u00e9tudiante au niveau coll\u00e9gial boursi\u00e8re compl\u00e8te et travaillant pour mieux s&rsquo;\u00e9tablir dans la sph\u00e8re sportive. Juste avant sa deuxi\u00e8me ann\u00e9e \u00e0 l&rsquo;universit\u00e9, Avery a pris la d\u00e9cision de d\u00e9velopper sa carri\u00e8re de piste &#8211; et c&rsquo;est \u00e0 ce moment-l\u00e0 qu&rsquo;elle s&rsquo;est retrouv\u00e9e face \u00e0 un obstacle\u00a0<\/span><span data-contrast=\"none\">inattendu:<\/span><span data-contrast=\"none\">\u00a0son diagnostic de trouble du spectre de la\u00a0<\/span><span data-contrast=\"none\">neuromy\u00e9lite<\/span><span data-contrast=\"none\">\u00a0optique (NMOSD).<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">Mais si le NMOSD a finalement pouss\u00e9 Avery \u00e0 quitter la piste, il l&rsquo;a propuls\u00e9e dans un tout nouvel\u00a0<\/span><span data-contrast=\"none\">espace:<\/span><span data-contrast=\"none\">\u00a0le plaidoyer et l&rsquo;activisme. R\u00e9cemment, je me suis assis avec Avery pour discuter de la fa\u00e7on dont elle a transform\u00e9 son diagnostic en une \u00e9preuve\u00a0<\/span><span data-contrast=\"none\">positive;<\/span><span data-contrast=\"none\">\u00a0comment et pourquoi elle a fond\u00e9 la Couch Pennies\u00a0<\/span><span data-contrast=\"none\">Foundation<\/span><span data-contrast=\"none\">; et des conseils pour les personnes nouvellement diagnostiqu\u00e9es.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276}\">\u00a0<\/span><b><span data-contrast=\"none\">Trouble du spectre de\u00a0<\/span><\/b><b><span data-contrast=\"none\">neuromy\u00e9lite<\/span><\/b><b><span data-contrast=\"none\">\u00a0optique<\/span><\/b><span data-contrast=\"none\">\u00a0(<\/span><a href=\"https:\/\/patientworthy.com\/neuromyelitis-optica-spectrum-disorder\/\"><span data-contrast=\"none\">NMOSD<\/span><\/a><span data-contrast=\"none\">)<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">Le trouble du spectre de la\u00a0<\/span><span data-contrast=\"none\">neuromy\u00e9lite<\/span><span data-contrast=\"none\">\u00a0optique (NMOSD) est un trouble inflammatoire rare qui affecte le cerveau et la moelle \u00e9pini\u00e8re. Beaucoup consid\u00e8rent NMOSD comme une maladie auto-immune. Dans ce cas, le syst\u00e8me immunitaire attaque par erreur la gaine de my\u00e9line, ou couverture nerveuse protectrice, qui provoque une inflammation du nerf optique et de la moelle \u00e9pini\u00e8re.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">NMOSD provoque des rechutes impr\u00e9visibles, ou des attaques, qui provoquent une aggravation des sympt\u00f4mes et une incapacit\u00e9 neurologique. Ces attaques peuvent se reproduire apr\u00e8s des jours, des mois, voire des ann\u00e9es. Le NMOSD est le plus souvent diagnostiqu\u00e9 chez les femmes entre 30 et 40 ans, mais peut affecter des personnes de tout \u00e2ge, race ou sexe.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">En raison des sympt\u00f4mes, la NMOSD est parfois diagnostiqu\u00e9e \u00e0 tort comme une scl\u00e9rose en plaques (SEP). Les principaux sympt\u00f4mes de NMOSD comprennent, mais ne sont pas limit\u00e9s\u00a0<\/span><span data-contrast=\"none\">\u00e0:<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<ul>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"2\" aria-setsize=\"-1\" data-aria-posinset=\"1\" data-aria-level=\"1\"><span data-contrast=\"none\">N\u00e9vrite optique et my\u00e9lite (inflammation du nerf optique et de la moelle \u00e9pini\u00e8re)<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"2\" aria-setsize=\"-1\" data-aria-posinset=\"2\" data-aria-level=\"1\"><span data-contrast=\"none\">Douleur oculaire (qui peut \u00eatre s\u00e9v\u00e8re)<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"2\" aria-setsize=\"-1\" data-aria-posinset=\"3\" data-aria-level=\"1\"><span data-contrast=\"none\">Perte de vision dans un ou les deux yeux<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"2\" aria-setsize=\"-1\" data-aria-posinset=\"4\" data-aria-level=\"1\"><span data-contrast=\"none\">Modifications du contr\u00f4le de la vessie<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"2\" aria-setsize=\"-1\" data-aria-posinset=\"5\" data-aria-level=\"1\"><span data-contrast=\"none\">Raideur articulaire et musculaire<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"2\" aria-setsize=\"-1\" data-aria-posinset=\"5\" data-aria-level=\"1\"><span data-contrast=\"none\">Maux de t\u00eate<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"2\" aria-setsize=\"-1\" data-aria-posinset=\"5\" data-aria-level=\"1\"><span data-contrast=\"none\">Naus\u00e9e et vomissements<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"2\" aria-setsize=\"-1\" data-aria-posinset=\"5\" data-aria-level=\"1\"><span data-contrast=\"none\">Douleur \u00e0 la colonne vert\u00e9brale, aux membres et au dos<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"2\" aria-setsize=\"-1\" data-aria-posinset=\"5\" data-aria-level=\"1\"><span data-contrast=\"none\">Paralysie des bras et des jambes<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"2\" aria-setsize=\"-1\" data-aria-posinset=\"5\" data-aria-level=\"1\"><span data-contrast=\"none\">Confusion<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"2\" aria-setsize=\"-1\" data-aria-posinset=\"5\" data-aria-level=\"1\"><span data-contrast=\"none\">Saisies<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/li>\n<\/ul>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">\u00c9tant donn\u00e9 que les dommages neurologiques caus\u00e9s par les attaques NMOSD peuvent \u00eatre irr\u00e9versibles, il est essentiel que les personnes atteintes de cette maladie re\u00e7oivent un diagnostic pr\u00e9cis et un traitement appropri\u00e9 le plus t\u00f4t possible. Actuellement, il existe des th\u00e9rapies approuv\u00e9es par la FDA pour les patients atteints de\u00a0<\/span><span data-contrast=\"none\">NMOSD:<\/span><span data-contrast=\"none\">\u00a0<\/span><span data-contrast=\"none\">Enspryng<\/span><span data-contrast=\"none\">,\u00a0<\/span><span data-contrast=\"none\">Soliris<\/span><span data-contrast=\"none\">\u00a0et\u00a0<\/span><span data-contrast=\"none\">Uplinza<\/span><span data-contrast=\"none\">. Certains m\u00e9decins peuvent \u00e9galement recommander des corticost\u00e9ro\u00efdes (en particulier lors d&rsquo;une crise) ou des traitements immunosuppresseurs.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><b><span data-contrast=\"none\">L&rsquo;histoire d&rsquo;Avery<\/span><\/b><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">En 2017, Avery\u00a0<\/span><span data-contrast=\"none\">Allmond<\/span><span data-contrast=\"none\">\u00a0se serait d\u00e9crite\u00a0<\/span><span data-contrast=\"none\">comme:<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">\u00abUn<\/span><span data-contrast=\"none\">\u00a0athl\u00e8te, un \u00e9tudiant, une personne tr\u00e8s insouciante, qui prend en quelque sorte la vie telle qu&rsquo;elle est.\u00bb<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">Elle a commenc\u00e9 \u00e0 courir au lyc\u00e9e et s&rsquo;est imm\u00e9diatement connect\u00e9e au\u00a0<\/span><span data-contrast=\"none\">sport;<\/span><span data-contrast=\"none\">\u00a0cela la faisait se sentir puissante et libre. En fin de compte, cela a conduit Avery \u00e0 poursuivre son voyage \u00e0 l&rsquo;universit\u00e9 et \u00e0 faire de la piste une plus grande partie de son avenir.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276}\">\u00a0<\/span><span data-contrast=\"none\">Alors qu&rsquo;elle commen\u00e7ait \u00e0 passer de la premi\u00e8re ann\u00e9e \u00e0 la deuxi\u00e8me ann\u00e9e, elle a consolid\u00e9 son objectif de faire passer sa carri\u00e8re sur piste au niveau sup\u00e9rieur. Chaque jour, elle a travaill\u00e9 au moins deux fois. Elle a chang\u00e9 son r\u00e9gime. Ces changements ont fait une\u00a0<\/span><span data-contrast=\"none\">diff\u00e9rence;<\/span><span data-contrast=\"none\">\u00a0Avery se sentait de plus en plus forte et puissante de minute en minute. \u00c0 toutes fins utiles, Avery \u00e9tait \u00e0 son apog\u00e9e physique.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><b><span data-contrast=\"none\">Sympt\u00f4mes NMOSD<\/span><\/b><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">Mais cet \u00e9t\u00e9-l\u00e0, les choses ont commenc\u00e9 \u00e0 changer lors d&rsquo;un voyage en Californie. Comme Avery l&rsquo;a\u00a0<\/span><span data-contrast=\"none\">d\u00e9crit:<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">\u00abJ&rsquo;\u00e9tais<\/span><span data-contrast=\"none\">\u00a0tr\u00e8s fatigu\u00e9, plus que d&rsquo;habitude, mais je l&rsquo;ai attribu\u00e9 au voyage. Puis j&rsquo;ai commenc\u00e9 \u00e0 ressentir une immense douleur dans mes bras et mes jambes au point que je n&rsquo;arr\u00eatais pas de dire \u00e0 tout le monde avec qui j&rsquo;\u00e9tais. Mon \u0153il gauche a commenc\u00e9 \u00e0 ressentir une douleur si intense qu&rsquo;elle s&rsquo;est transform\u00e9e en migraine et m\u00eame si j&rsquo;avais d\u00e9j\u00e0 eu des migraines auparavant, la douleur n&rsquo;avait rien de tel.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">Au d\u00e9but, Avery ne savait pas si c&rsquo;\u00e9tait quelque chose dont elle devrait s&rsquo;inqui\u00e9ter. Ses amis se demandaient s&rsquo;il ne s&rsquo;agissait que de la fatigue du voyage, mais sa m\u00e8re a promis qu&rsquo;Avery pourrait consulter un m\u00e9decin \u00e0 son retour \u00e0 la maison. En fin de compte, c&rsquo;\u00e9tait une bonne id\u00e9e, car ses sympt\u00f4mes ne cessaient de s&rsquo;aggraver. Par exemple, lors de son vol de retour, Avery a\u00a0<\/span><span data-contrast=\"none\">expliqu\u00e9:<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">\u00abJ&rsquo;ai<\/span><span data-contrast=\"none\">\u00a0remarqu\u00e9 que pendant que je lisais mon livre, les mots \u00e9taient tr\u00e8s flous. J&rsquo;ai paniqu\u00e9 parce que je n&rsquo;avais jamais eu une seule migraine qui m&rsquo;avait enlev\u00e9 la vue. Au moment o\u00f9 je suis rentr\u00e9 \u00e0 la maison, la douleur ne faisait qu&#8217;empirer dans mes jambes et mes yeux.<\/span><span data-contrast=\"none\">\u202f<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><b><span data-contrast=\"none\">Le chemin vers le diagnostic<\/span><\/b><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">Quand Avery est finalement\u00a0<\/span><span data-contrast=\"none\">revenue<\/span><span data-contrast=\"none\">\u00a0\u00e0 la maison, sa m\u00e8re l&rsquo;a emmen\u00e9e aux urgences. Apr\u00e8s avoir d\u00e9crit\u00a0<\/span><a href=\"https:\/\/www.gene.com\/stories\/risk-of-relapse?topic=nmosd\"><span data-contrast=\"none\">ses sympt\u00f4mes<\/span><\/a><span data-contrast=\"none\">, les m\u00e9decins \u00e9taient convaincus qu&rsquo;il ne s&rsquo;agissait que d&rsquo;une grave migraine. Certains traitements ont\u00a0<\/span><span data-contrast=\"none\">fonctionn\u00e9;<\/span><span data-contrast=\"none\">\u00a0Avery a expliqu\u00e9 qu&rsquo;elle \u00e9tait rentr\u00e9e chez elle avec environ 50% de sa douleur r\u00e9duite. Mais la douleur n&rsquo;a jamais compl\u00e8tement disparu. En fait, au cours des deux jours suivants, la douleur au bras et \u00e0 la jambe s&rsquo;est intensifi\u00e9e, tout comme sa vision floue. Avery est retourn\u00e9 aux urgences, mais a de nouveau \u00e9t\u00e9 trait\u00e9 pour une migraine et renvoy\u00e9 chez lui.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">Lors de sa troisi\u00e8me visite aux urgences en moins d&rsquo;une semaine, Avery \u00e9tait de plus en plus inqui\u00e8te. Elle a dit aux\u00a0<\/span><span data-contrast=\"none\">m\u00e9decins:<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">\u00abC&rsquo;est<\/span><span data-contrast=\"none\">\u00a0vraiment mauvais. Je ne vois pas et je ne sais pas quoi faire. \u00bb<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">Cette fois (peut-\u00eatre \u00e9tonnamment) Avery n&rsquo;a pas re\u00e7u de diagnostic de migraine. Malheureusement, elle n&rsquo;a pas non plus re\u00e7u son diagnostic NMOSD. Au lieu de cela, les m\u00e9decins ont dit \u00e0 Avery qu&rsquo;elle souffrait d&rsquo;anxi\u00e9t\u00e9 et l&rsquo;ont mise en contact avec un neurologue qui lui a ensuite prescrit des m\u00e9dicaments contre la d\u00e9pression et l&rsquo;anxi\u00e9t\u00e9. Serait-ce ce \u00e0 quoi ses sympt\u00f4mes se\u00a0<\/span><span data-contrast=\"none\">r\u00e9sumaient?<\/span><span data-contrast=\"none\">\u00a0Avery ne croyait pas n\u00e9cessairement qu&rsquo;elle \u00e9tait d\u00e9prim\u00e9e, mais si c&rsquo;est ce que les m\u00e9decins disaient\u2026<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276}\">\u00a0<\/span><b><span data-contrast=\"none\">\u00c0 la d\u00e9couverte de NMOSD<\/span><\/b><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">Mais tout a chang\u00e9 un matin quand elle s&rsquo;est r\u00e9veill\u00e9e incapable de bouger vraiment. Comme elle l&rsquo;a\u00a0<\/span><span data-contrast=\"none\">d\u00e9crit:<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">\u00abJe<\/span><span data-contrast=\"none\">\u00a0me suis r\u00e9veill\u00e9 sans pouvoir bouger mes extr\u00e9mit\u00e9s comme je le voulais. J&rsquo;ai essay\u00e9 de me lever et j&rsquo;ai tr\u00e9buch\u00e9 vers la salle de bain, mais je ne pouvais rien faire et ma douleur \u00e9tait si intense. J&rsquo;ai cri\u00e9 pour ma m\u00e8re et elle a essay\u00e9 de m&rsquo;habiller, mais j&rsquo;avais tellement mal qu&rsquo;elle pouvait \u00e0 peine me toucher.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">Pour la quatri\u00e8me fois en \u00e0 peine une semaine, Avery est retourn\u00e9 aux urgences. Cette fois, il \u00e9tait clair qu&rsquo;elle ne souffrait ni de migraine, ni d&rsquo;anxi\u00e9t\u00e9. Peu de temps apr\u00e8s son admission \u00e0 l&rsquo;h\u00f4pital, elle a perdu la vue de son \u0153il droit. La paralysie s&rsquo;installe dans tout son corps.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">Cela a commenc\u00e9 son odyss\u00e9e\u00a0<\/span><span data-contrast=\"none\">diagnostique:<\/span><span data-contrast=\"none\">\u00a0des tests et des scans de la vue et de la vue. Mais finalement, Avery est\u00a0<\/span><span data-contrast=\"none\">reconnaissante<\/span><span data-contrast=\"none\">\u00a0de la rapidit\u00e9 avec laquelle elle a pu recevoir son diagnostic. Elle a\u00a0<\/span><span data-contrast=\"none\">expliqu\u00e9:<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">\u00abJe<\/span><span data-contrast=\"none\">\u00a0connais des personnes dont les diagnostics NMOSD ont mis dix ans \u00e0 \u00eatre d\u00e9termin\u00e9s. Le mien avait moins de deux mois, et j&rsquo;avais le sp\u00e9cialiste ici m\u00eame dans ma propre ville.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><b><span data-contrast=\"none\">En savoir plus sur NMOSD<\/span><\/b><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">Quand elle a \u00e9t\u00e9 diagnostiqu\u00e9e pour la premi\u00e8re fois, Avery a expliqu\u00e9 que sa premi\u00e8re pens\u00e9e\u00a0<\/span><span data-contrast=\"none\">\u00e9tait:<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">\u00abQu&rsquo;arrivera<\/span><span data-contrast=\"none\">-t-il \u00e0 ma carri\u00e8re sur piste et quand puis-je courir \u00e0 nouveau? C&rsquo;\u00e9tait assez\u00a0<\/span><span data-contrast=\"none\">dur;<\/span><span data-contrast=\"none\">\u00a0Je ne pouvais pas vraiment accepter le fait que la piste n&rsquo;allait plus faire partie de ma vie et je devais me concentrer sur la r\u00e9\u00e9ducation. \u00ab\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">Naturellement, Avery a travers\u00e9 une p\u00e9riode de deuil, une p\u00e9riode d&rsquo;adaptation au cours de laquelle elle a d\u00fb se r\u00e9apprendre. Elle a expliqu\u00e9 que son corps, sa personnalit\u00e9 et tout ce qu&rsquo;elle savait sur elle-m\u00eame avaient chang\u00e9.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">Mais apr\u00e8s environ un an, elle savait qu&rsquo;elle voulait utiliser son exp\u00e9rience pour quelque chose de positif. Elle\u00a0<\/span><span data-contrast=\"none\">pensait:<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">\u00abC&rsquo;est<\/span><span data-contrast=\"none\">\u00a0nul, mais je ne veux pas que ce soit mauvais pour les autres. Je ne veux pas que les autres passent \u00e0 c\u00f4t\u00e9 et je veux que tout le monde ait une chance \u00e9gale de s&rsquo;\u00e9panouir. Comment puis-je \u00eatre un d\u00e9fenseur et que puis-je faire pour\u00a0<\/span><span data-contrast=\"none\">aider?<\/span><span data-contrast=\"none\">\u00a0\u00bb<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">En partie, Avery a commenc\u00e9 \u00e0 utiliser son compte\u00a0<\/span><a href=\"https:\/\/www.instagram.com\/chronically.ave\/\"><span data-contrast=\"none\">Instagram<\/span><\/a><span data-contrast=\"none\">\u00a0pour sensibiliser le public \u00e0 la NMOSD et \u00e0 d&rsquo;autres maladies rares. Mais elle a toujours su qu&rsquo;elle voulait pousser son plaidoyer un peu plus loin.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">Ainsi, la Fondation Couch Pennies est n\u00e9e.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><b><span data-contrast=\"none\">La Fondation Couch Pennies<\/span><\/b><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">Sur le site Web, Avery d\u00e9crit la\u00a0<\/span><a href=\"http:\/\/www.couchpenniesfoundation.org\/\"><span data-contrast=\"none\">Fondation Couch Pennies<\/span><\/a><span data-contrast=\"none\">\u00a0<\/span><span data-contrast=\"none\">comme:<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">\u00abUne<\/span><span data-contrast=\"none\">\u00a0association \u00e0 but non lucratif non constitu\u00e9e en soci\u00e9t\u00e9 qui s&rsquo;efforce d&rsquo;\u00e9duquer et de d\u00e9fendre TOUTES les maladies rares, de fournir des ressources aux patients et \u00e0 leurs proches et de collecter des fonds pour les causes de maladies rares.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">Quand Avery avait environ 12 ans, elle a \u00e9t\u00e9 inspir\u00e9e par quelqu&rsquo;un qu&rsquo;elle connaissait avec un\u00a0<\/span><a href=\"https:\/\/patientworthy.com\/neuroblastoma\/\"><span data-contrast=\"none\">neuroblastome<\/span><\/a><span data-contrast=\"none\">, un cancer rare qui se forme \u00e0 partir de cellules immatures dans les tissus nerveux. Alors qu&rsquo;Avery regardait cette fille traverser son parcours de diagnostic et de traitement, quelque chose est\u00a0<\/span><span data-contrast=\"none\">ressorti:<\/span><span data-contrast=\"none\">\u00a0les difficult\u00e9s financi\u00e8res associ\u00e9es au traitement de maladies rares. C&rsquo;\u00e9tait \u00e0 ce stade, pensa\u00a0<\/span><span data-contrast=\"none\">Avery:<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">\u00abD&rsquo;accord<\/span><span data-contrast=\"none\">, je veux gu\u00e9rir le cancer. Je veux aider les gens. Mais je me suis assis sur cette id\u00e9e pendant un moment jusqu&rsquo;\u00e0 ce qu&rsquo;elle r\u00e9apparaisse apr\u00e8s mon diagnostic.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">Tout au long de 2017 et 2018, Avery a pass\u00e9 une bonne partie de son temps \u00e0 planifier comment d\u00e9velopper la Couch Pennies\u00a0<\/span><span data-contrast=\"none\">Foundation<\/span><span data-contrast=\"none\">, dans quelle direction la prendre et o\u00f9 se trouve le plus grand besoin d&rsquo;aide, de soutien ou de ressources. Finalement, elle a pu lancer officiellement la Fondation en 2018.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276}\">\u00a0<\/span><b><span data-contrast=\"none\">\u00c9v\u00e9nements uniques<\/span><\/b><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">Depuis, la Couch Pennies\u00a0<\/span><span data-contrast=\"none\">Foundation<\/span><span data-contrast=\"none\">\u00a0travaille pour faire un changement. Bien qu&rsquo;Avery ait d\u00e9clar\u00e9 que l&rsquo;organisation se d\u00e9veloppe lentement mais s\u00fbrement, la Fondation a fait des progr\u00e8s dans le domaine des maladies rares gr\u00e2ce \u00e0 des dons, des programmes de soins, des subventions et des recherches. Dans une exp\u00e9rience, Avery a\u00a0<\/span><span data-contrast=\"none\">expliqu\u00e9:<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">\u00abJ&rsquo;ai<\/span><span data-contrast=\"none\">\u00a0\u00e9t\u00e9 invit\u00e9 au Capitole et j&rsquo;ai pu partager mon histoire, ce qu&rsquo;est Couch Pennies et ce que l&rsquo;organisation vise \u00e0 faire. J&rsquo;ai eu la chance d&rsquo;avoir des\u00a0<\/span><span data-contrast=\"none\">l\u00e9gislateurs l\u00e0-bas pour regarder et \u00e9couter, ce qui a finalement contribu\u00e9 \u00e0 cr\u00e9er d&rsquo;autres opportunit\u00e9s. \u00bb<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">Par le biais de la Fondation, Avery a \u00e9galement organis\u00e9 une course Spartan \u00e0 San Francisco pendant deux ann\u00e9es cons\u00e9cutives. Pendant ce temps, elle s&rsquo;est associ\u00e9e \u00e0 un studio de fitness dans le quartier de Castro. Apr\u00e8s avoir promis de l&rsquo;argent, les participants ont particip\u00e9 \u00e0 des courses d&rsquo;obstacles. Cet \u00e9v\u00e9nement a \u00e9galement permis de partager son histoire avec les participants, ainsi que des informations sur le NMOSD.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><b><span data-contrast=\"none\">Projet Paint\u00a0<\/span><\/b><b><span data-contrast=\"none\">Your<\/span><\/b><b><span data-contrast=\"none\">\u00a0Hands<\/span><\/b><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">Par le biais de la Couch Pennies\u00a0<\/span><span data-contrast=\"none\">Foundation<\/span><span data-contrast=\"none\">, Avery a \u00e9galement g\u00e9r\u00e9 le projet\u00a0<\/span><a href=\"http:\/\/www.couchpenniesfoundation.org\/paint-your-hands-project.html\"><span data-contrast=\"none\">Paint\u00a0<\/span><span data-contrast=\"none\">Your<\/span><span data-contrast=\"none\">\u00a0Hands<\/span><\/a><span data-contrast=\"none\">\u00a0pour la journ\u00e9e des maladies rares. Ceci \u00e9tait bas\u00e9 sur une id\u00e9e de la journ\u00e9e officielle\u00a0<\/span><a href=\"https:\/\/www.rarediseaseday.org\/\"><span data-contrast=\"none\">des maladies rares<\/span><\/a><span data-contrast=\"none\">, qui a historiquement men\u00e9 diff\u00e9rentes activit\u00e9s avec de la peinture pour sensibiliser sur les plus de 7 000 maladies rares qui existent. Pour son projet, Avery a d\u00e9clar\u00e9\u00a0<\/span><span data-contrast=\"none\">que:<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">\u00abJe<\/span><span data-contrast=\"none\">\u00a0voulais aller plus loin. Je me suis demand\u00e9 comment je pouvais mettre en \u00e9vidence les diff\u00e9rentes maladies rares sous toutes leurs formes et formes, et j&rsquo;ai demand\u00e9 \u00e0 certaines des personnes les plus inspirantes que j&rsquo;ai trouv\u00e9es sur les r\u00e9seaux sociaux de participer. La plupart ont pu se peindre les mains et nous avons fait participer des gens de toutes les r\u00e9gions du monde. \u00bb<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">Le projet a non seulement servi \u00e0 mettre en \u00e9vidence le parcours des personnes atteintes de maladies rares, mais aussi \u00e0 aider \u00e0 cr\u00e9er une communaut\u00e9 et \u00e0 sensibiliser. Avery consid\u00e9rait cela comme l&rsquo;un de ses projets les plus inspirants et les plus influents \u00e0 ce jour.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276}\">\u00a0<\/span><span data-contrast=\"none\">Pour la Journ\u00e9e des maladies rares 2021, Avery a \u00e9galement pris la parole lors d&rsquo;un \u00e9v\u00e9nement en association avec l&rsquo;Organisation nationale des maladies rares (NORD), le responsable de la Journ\u00e9e des maladies rares et Rare Action Colorado.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><b><span data-contrast=\"none\">Plaidoyer pour la NMOSD et les maladies rares<\/span><\/b><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">En dehors de son travail avec la Couch Pennies\u00a0<\/span><span data-contrast=\"none\">Foundation<\/span><span data-contrast=\"none\">, Avery travaille constamment \u00e0 sensibiliser le public \u00e0 la NMOSD et \u00e0 d&rsquo;autres maladies rares. Elle a travaill\u00e9 et parl\u00e9 avec de nombreux groupes de d\u00e9fense et soci\u00e9t\u00e9s pharmaceutiques, comme Genentech. Elle a \u00e9galement\u00a0<\/span><span data-contrast=\"none\">expliqu\u00e9:<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">\u00abJ&rsquo;ai<\/span><span data-contrast=\"none\">\u00a0eu l&rsquo;opportunit\u00e9 incroyable de m&rsquo;associer \u00e0 NORD en tant que d\u00e9fenseur personnel et je suis en mesure de parler fr\u00e9quemment avec les l\u00e9gislateurs de la l\u00e9gislation, des politiques et des probl\u00e8mes dans ce domaine.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">Mais l&rsquo;une de ses formes de plaidoyer pr\u00e9f\u00e9r\u00e9es est de parler directement avec les membres de la communaut\u00e9 des maladies rares. Elle a expliqu\u00e9 que les m\u00e9dias sociaux lui permettaient de se connecter avec d&rsquo;autres personnes atteintes de maladies rares et qu&rsquo;elle\u00a0<\/span><span data-contrast=\"none\">avait:<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">\u00abM&rsquo;a<\/span><span data-contrast=\"none\">\u00a0amen\u00e9 des gens que je consid\u00e8re maintenant comme de la famille. Je ch\u00e9ris vraiment chaque amiti\u00e9. Mais ce qui me pousse \u00e0 continuer \u00e0 grandir en tant que d\u00e9fenseur, ce sont les messages al\u00e9atoires que je re\u00e7ois. Je peux aller sur Instagram tous les jours et trouver un message de quelqu&rsquo;un qui vit quelque chose de similaire et qui a d\u00e9cid\u00e9 que j&rsquo;\u00e9tais celui qui l&rsquo;inspirait. Cela me rappelle que je fais tout pour une raison et que chaque message est puissant et sp\u00e9cial pour moi. \u00ab\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><b><span data-contrast=\"none\">Les conseils d\u2019Avery<\/span><\/b><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">Dans certains cas, Avery \u00e9coute simplement ceux qui la contactent. Dans d&rsquo;autres, elle offre des conseils et de l&rsquo;aide sur la fa\u00e7on de passer un nouveau diagnostic ou sur la marche \u00e0\u00a0<\/span><span data-contrast=\"none\">suivre:<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">\u00abLa<\/span><span data-contrast=\"none\">\u00a0connaissance est le pouvoir. Il est si important de savoir ce qui se passe avec vous, votre corps, votre maladie. Il y a tellement de ressources\u00a0<\/span><span data-contrast=\"none\">auxquelles vous pouvez acc\u00e9der, et les sites Web de la Fondation contiennent des ressources que vous pouvez partager avec vous-m\u00eame, votre famille ou votre \u00e9quipe m\u00e9dicale. \u00bb<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">Plus pr\u00e9cis\u00e9ment, en ce qui concerne NMOSD, Avery a \u00e9galement indiqu\u00e9 que les informations disponibles ne sont pas toujours exactes. Par exemple, de nombreuses personnes qui la contactent ne comprennent pas les dommages et la douleur r\u00e9siduels qui peuvent encore \u00eatre pr\u00e9sents apr\u00e8s une attaque NMOSD. Une fa\u00e7on de g\u00e9rer cela, a-t-elle d\u00e9clar\u00e9, est d&rsquo;avoir des informations claires donn\u00e9es \u00e0 toutes les personnes nouvellement\u00a0<\/span><span data-contrast=\"none\">diagnostiqu\u00e9es:<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">\u00abIl<\/span><span data-contrast=\"none\">\u00a0ne devrait pas \u00eatre difficile d\u2019apprendre ce qui se passe \u00e0 l\u2019int\u00e9rieur de votre corps. Nous devrions pouvoir disposer de ressources bien regroup\u00e9es et facilement compr\u00e9hensibles afin que les gens comprennent que m\u00eame apr\u00e8s une attaque, la maladie a encore un impact \u00e0 l&rsquo;int\u00e9rieur de votre corps. Plus vous avez de connaissances, plus vous \u00eates bien \u00e9quip\u00e9 pour y faire face. \u00bb<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276}\">\u00a0<\/span><b><span data-contrast=\"none\">Devenir Avery<\/span><\/b><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">Aujourd&rsquo;hui, \u00e0 23 ans, Avery fait encore des progr\u00e8s &#8211; mais cette fois en mati\u00e8re de plaidoyer et de d\u00e9veloppement personnel, plut\u00f4t que de suivi. Elle a expliqu\u00e9 que son parcours lui avait vraiment appris qui elle \u00e9tait et\u00a0<\/span><span data-contrast=\"none\">que:<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">\u00abL&rsquo;Avery<\/span><span data-contrast=\"none\">\u00a0est maintenant tellement reconnaissant pour chaque seconde qui vient avec chaque jour parce que, \u00e0 chaque seconde, ma vue et ma mobilit\u00e9 pourraient facilement m&rsquo;\u00eatre enlev\u00e9es. Je suis reconnaissant, je suis compatissant, je suis empathique envers les autres. Je suis toujours sur mon chemin, mais je suis tellement excit\u00e9 de d\u00e9voiler cette personne que je ne savais pas que j&rsquo;\u00e9tais et \u00eatre un d\u00e9fenseur, un mod\u00e8le solide et un leader. \u00ab\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276}\">\u00a0<\/span><span data-contrast=\"none\">Quand elle ne sensibilise pas, Avery r\u00e9alise de nouveaux talents. Elle adore cr\u00e9er, dessiner et lire des livres sur une grande vari\u00e9t\u00e9 de sujets. Elle passe beaucoup de temps avec sa maman-<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">\u00abMon<\/span><span data-contrast=\"none\">\u00a0meilleur ami et mon soignant, j&rsquo;ai donc obtenu une bonne offre pour celui-l\u00e0.\u00bb<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">sur<\/span><span data-contrast=\"none\">\u00a0des aventures folles dans la voiture. Elle aime apprendre la spiritualit\u00e9 et les cristaux. Une de ses exp\u00e9riences pr\u00e9f\u00e9r\u00e9es est d&rsquo;\u00eatre \u00e0\u00a0<\/span><span data-contrast=\"none\">l&rsquo;ext\u00e9rieur;<\/span><span data-contrast=\"none\">\u00a0Avery se d\u00e9crit comme une personne de nature totale.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">Dans l&rsquo;ensemble, elle a reconnu que l&rsquo;atteinte de ce point \u00e9tait parfois difficile et stressante. Que sa vie \u00e0 23 ans n&rsquo;\u00e9tait pas ce\u00a0<\/span><span data-contrast=\"none\">qu&rsquo;elle avait jamais<\/span><span data-contrast=\"none\">\u00a0imagin\u00e9 \u00e0 19 ans. Mais en se rem\u00e9morant ses propres exp\u00e9riences et le chemin parcouru, elle a \u00e9galement laiss\u00e9 une id\u00e9e\u00a0<\/span><span data-contrast=\"none\">importante:<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><span data-contrast=\"none\">\u00abNe<\/span><span data-contrast=\"none\">\u00a0consid\u00e9rez pas le diagnostic comme une chose n\u00e9gative. L\u2019opportunit\u00e9 d\u2019utiliser cette qualit\u00e9 rare et unique pour changer le monde peut \u00eatre tr\u00e8s positive. \u00bb<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:276,&quot;469777462&quot;:[916,1832,2748,3664,4580,5496,6412,7328,8244,9160,10076,10992,11908,12824,13740,14656],&quot;469777927&quot;:[0,0,0,0,0,0,0,0,0,0,0,0,0,0,0,0],&quot;469777928&quot;:[1,1,1,1,1,1,1,1,1,1,1,1,1,1,1,1]}\">\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Tous les documents publi\u00e9s sur PatientWorthy.com sont r\u00e9dig\u00e9s en anglais. Pour la commodit\u00e9 de notre public non anglophone, les traductions de ces documents sont fournies par l\u2019interm\u00e9diaire d\u2019un logiciel de traduction automatique aliment\u00e9 par Google Translate. Toutes les traductions sont fournies en tant que telles, sans garantie d\u2019aucune sorte, explicite ou implicite, quant \u00e0 l\u2019exactitude, [&hellip;]<\/p>\n","protected":false},"author":1217,"featured_media":1058016,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":[],"categories":[13986],"tags":[],"_links":{"self":[{"href":"https:\/\/patientworthy.com\/fr\/wp-json\/wp\/v2\/posts\/1190672"}],"collection":[{"href":"https:\/\/patientworthy.com\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/patientworthy.com\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/patientworthy.com\/fr\/wp-json\/wp\/v2\/users\/1217"}],"replies":[{"embeddable":true,"href":"https:\/\/patientworthy.com\/fr\/wp-json\/wp\/v2\/comments?post=1190672"}],"version-history":[{"count":0,"href":"https:\/\/patientworthy.com\/fr\/wp-json\/wp\/v2\/posts\/1190672\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/patientworthy.com\/fr\/wp-json\/wp\/v2\/media\/1058016"}],"wp:attachment":[{"href":"https:\/\/patientworthy.com\/fr\/wp-json\/wp\/v2\/media?parent=1190672"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/patientworthy.com\/fr\/wp-json\/wp\/v2\/categories?post=1190672"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/patientworthy.com\/fr\/wp-json\/wp\/v2\/tags?post=1190672"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}