{"id":1593,"date":"2018-11-21T12:04:19","date_gmt":"2018-11-21T11:04:19","guid":{"rendered":"https:\/\/amyloidosisalliance.local\/appel-a-temoignages-sur-lamylose\/"},"modified":"2026-09-29T15:32:10","modified_gmt":"2026-09-29T13:32:10","slug":"appel-a-temoignages-sur-lamylose","status":"publish","type":"post","link":"https:\/\/www.amyloidosisalliance.org\/fr\/appel-a-temoignages-sur-lamylose\/","title":{"rendered":"Appel \u00e0 t\u00e9moignages sur l\u2019amylose"},"content":{"rendered":"\n<h2 style=\"font-weight: 400;\">Notre appel \u00e0 t\u00e9moignages sur l\u2019amylose dans le monde.<\/h2>\n<p style=\"font-weight: 400;\">Votre exp\u00e9rience vaut de l\u2019or\u00a0: envoyez-nous vos t\u00e9moignages.<\/p>\n<p style=\"font-weight: 400;\">L\u2019an dernier, nous avons lanc\u00e9 un appel \u00e0 t\u00e9moignages, en invitant les personnes atteintes d\u2019amylose, leurs familles et leurs aidants \u00e0 nous \u00e9crire \u00e0 l\u2019occasion de la <a href=\"http:\/\/www.worldamyloidosisday.org\">Journ\u00e9e mondiale de l\u2019amylose<\/a>. Notre objectif \u00e9tait de recueillir le plus d\u2019histoires possible pour partager l\u2019exp\u00e9rience de toutes les personnes confront\u00e9es d\u2019une mani\u00e8re ou d\u2019une autre \u00e0 l\u2019amylose.<\/p>\n\n<h2 style=\"font-weight: 400;\">Le premier appel \u00e0 t\u00e9moignages a \u00e9t\u00e9 un grand succ\u00e8s<\/h2>\n<p style=\"font-weight: 400;\">C\u2019est pourquoi nous le renouvelons cette ann\u00e9e. Les t\u00e9moignages recueillis \u00e9taient touchants, parfois bouleversants, mais surtout porteurs d\u2019espoir. Nous voulons donc entendre les histoires de nouvelles personnes touch\u00e9es par l\u2019amylose.<\/p>\n<p style=\"font-weight: 400;\">Que vous soyez atteint de cette maladie, proche, gu\u00e9ri, m\u00e9decin, aidant, infirmier, quelle que soit votre situation, n\u2019h\u00e9sitez pas \u00e0 t\u00e9moigner. Parlons de cette maladie\u00a0: cela aidera les g\u00e9n\u00e9rations futures \u00e0 y faire face. Cela aidera aussi les g\u00e9n\u00e9rations actuelles en leur donnant de l\u2019espoir et en faisant progresser la science.<\/p>\n\n<h2 style=\"font-weight: 400;\">L\u2019amylose est une maladie silencieuse.<\/h2>\n<p style=\"font-weight: 400;\">On ne la voit pas venir, elle se fait discr\u00e8te, ses sympt\u00f4mes ressemblent \u00e0 ceux d\u2019une maladie banale. C\u2019est l\u2019une des raisons pour lesquelles elle est difficile \u00e0 diagnostiquer. Les patients cherchent parfois pendant des ann\u00e9es la cause de leurs maux. Ils sentent que quelque chose ne va pas, ils font confiance \u00e0 leur instinct, et ils ont raison.<\/p>\n<p style=\"font-weight: 400;\">Il faut en moyenne quatre ans pour diagnostiquer une amylose. Quatre ans de doute et d\u2019angoisse. Quatre ans \u00e0 \u00eatre renvoy\u00e9 d\u2019un sp\u00e9cialiste \u00e0 l\u2019autre. Jusqu\u2019\u00e0 trouver enfin, dans le monde m\u00e9dical, quelqu\u2019un qui conna\u00eet la maladie et peut la diagnostiquer.<\/p>\n<p style=\"font-weight: 400;\">Les patients parcourent parfois leur pays, voire consultent des sp\u00e9cialistes \u00e0 l\u2019\u00e9tranger, pour trouver le nom de leur maladie. Leur parcours est sem\u00e9 d\u2019obstacles, mais leur courage est remarquable. C\u2019est pourquoi leurs histoires sont si belles \u00e0 lire. Ils ont une exp\u00e9rience qui doit \u00eatre racont\u00e9e au monde.<\/p>\n<p style=\"font-weight: 400;\">Leurs familles et leurs proches les accompagnent aussi sur ce chemin. Ils doivent porter avec eux une maladie qu\u2019ils n\u2019ont m\u00eame pas, dont ils ne connaissent pas le ressenti. Pourtant, ils restent \u00e0 leurs c\u00f4t\u00e9s pour les soutenir et leur donner de la force au quotidien.<\/p>\n\n<h2 style=\"font-weight: 400;\">Les h\u00e9ros de l\u2019amylose.<\/h2>\n<p style=\"font-weight: 400;\">Nous demandons donc \u00e0 tous ces h\u00e9ros du quotidien, des patients aux m\u00e9decins en passant par les proches, de partager avec nous leur exp\u00e9rience enrichissante.<\/p>\n<p style=\"font-weight: 400;\">En lib\u00e9rant la parole, nous faisons progresser la science.<\/p>\n<p style=\"font-weight: 400;\">Luttons ensemble contre l\u2019amylose.<\/p>\n<p style=\"font-weight: 400;\">\u27a1\ufe0f Pour t\u00e9moigner, rendez-vous sur ce lien\u00a0: <a href=\"https:\/\/www.worldamyloidosisday.org\/testimonials\/\">https:\/\/www.worldamyloidosisday.org\/testimonials\/ \u2b05\ufe0f<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Patients, familles, aidants et m\u00e9decins\u00a0: partagez votre exp\u00e9rience de l\u2019amylose. L\u2019Alliance recueille \u00e0 nouveau des t\u00e9moignages pour la Journ\u00e9e mondiale de l\u2019amylose.<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[24],"tags":[],"class_list":["post-1593","post","type-post","status-publish","format-standard","hentry","category-actualites"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.6 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Appel \u00e0 t\u00e9moignages sur l\u2019amylose<\/title>\n<meta name=\"description\" content=\"Patients, familles, aidants et m\u00e9decins\u00a0: partagez votre exp\u00e9rience de l\u2019amylose. 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