{"id":136201,"date":"2025-03-17T09:00:05","date_gmt":"2025-03-17T13:00:05","guid":{"rendered":"https:\/\/wfh.org\/?p=136201"},"modified":"2025-03-14T11:30:39","modified_gmt":"2025-03-14T15:30:39","slug":"le-site-de-la-journee-mondiale-de-lhemophilie-2025-dedie-aux-recits-est-en-ligne","status":"publish","type":"post","link":"https:\/\/wfh.org\/fr\/article\/le-site-de-la-journee-mondiale-de-lhemophilie-2025-dedie-aux-recits-est-en-ligne\/","title":{"rendered":"Le site de la Journ\u00e9e mondiale de l\u2019h\u00e9mophilie 2025 d\u00e9di\u00e9 aux r\u00e9cits est en ligne !"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-post\" data-elementor-id=\"136201\" class=\"elementor elementor-136201 elementor-135382\" data-elementor-post-type=\"post\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-2dcd01c elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"2dcd01c\" data-element_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-ecb7231\" data-id=\"ecb7231\" data-element_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-6b6350a elementor-widget elementor-widget-text-editor\" data-id=\"6b6350a\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.23.0 - 25-07-2024 *\/\n.elementor-widget-text-editor.elementor-drop-cap-view-stacked .elementor-drop-cap{background-color:#69727d;color:#fff}.elementor-widget-text-editor.elementor-drop-cap-view-framed .elementor-drop-cap{color:#69727d;border:3px solid;background-color:transparent}.elementor-widget-text-editor:not(.elementor-drop-cap-view-default) .elementor-drop-cap{margin-top:8px}.elementor-widget-text-editor:not(.elementor-drop-cap-view-default) .elementor-drop-cap-letter{width:1em;height:1em}.elementor-widget-text-editor .elementor-drop-cap{float:left;text-align:center;line-height:1;font-size:50px}.elementor-widget-text-editor .elementor-drop-cap-letter{display:inline-block}<\/style>\t\t\t\t<p><a href=\"https:\/\/whdstories.wfh.org\/\" target=\"_blank\" rel=\"noopener\">Le site de la Journ\u00e9e mondiale de l\u2019h\u00e9mophilie d\u00e9di\u00e9 aux r\u00e9cits<\/a> vous offre la possibilit\u00e9 de mettre votre histoire en ligne, qu\u2019elle soit sous forme \u00e9crite ou vid\u00e9o \u2013 racontez comment un trouble de la coagulation vous a affect\u00e9\u00b7e ou affect\u00e9 l\u2019un\u00b7e de vos proches. Ce site est aussi une excellente mani\u00e8re de d\u00e9couvrir les histoire d\u2019autres personnes touch\u00e9es par ces troubles, ou celles de leurs proches.<\/p>\n<p>Au fil des ann\u00e9es, nous avons re\u00e7u beaucoup de r\u00e9cits. Voici trois histoires sous forme \u00e9crite et deux vid\u00e9os que nous voulions partager avec vous. Nous avons s\u00e9lectionn\u00e9 des extraits de chacune d\u2019entre elles\u00a0; si vous souhaitez d\u00e9couvrir l\u2019histoire en entier, cliquez sur le lien.<\/p>\n<p><em>N.B.\u00a0: le contenu publi\u00e9 sur le site de la Journ\u00e9e de l\u2019h\u00e9mophilie d\u00e9di\u00e9 aux r\u00e9cits a \u00e9t\u00e9 soumis par des tiers\u00a0; il ne repr\u00e9sente pas la F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie ni ne constitue une validation par celle-ci.<\/em><\/p>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-ad8ad44 elementor-widget-divider--view-line elementor-widget elementor-widget-divider\" data-id=\"ad8ad44\" data-element_type=\"widget\" data-widget_type=\"divider.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.23.0 - 25-07-2024 *\/\n.elementor-widget-divider{--divider-border-style:none;--divider-border-width:1px;--divider-color:#0c0d0e;--divider-icon-size:20px;--divider-element-spacing:10px;--divider-pattern-height:24px;--divider-pattern-size:20px;--divider-pattern-url:none;--divider-pattern-repeat:repeat-x}.elementor-widget-divider .elementor-divider{display:flex}.elementor-widget-divider .elementor-divider__text{font-size:15px;line-height:1;max-width:95%}.elementor-widget-divider .elementor-divider__element{margin:0 var(--divider-element-spacing);flex-shrink:0}.elementor-widget-divider .elementor-icon{font-size:var(--divider-icon-size)}.elementor-widget-divider .elementor-divider-separator{display:flex;margin:0;direction:ltr}.elementor-widget-divider--view-line_icon .elementor-divider-separator,.elementor-widget-divider--view-line_text .elementor-divider-separator{align-items:center}.elementor-widget-divider--view-line_icon .elementor-divider-separator:after,.elementor-widget-divider--view-line_icon 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var(--divider-color)}.elementor-widget-divider--separator-type-pattern{--divider-border-style:none}.elementor-widget-divider--separator-type-pattern.elementor-widget-divider--view-line .elementor-divider-separator,.elementor-widget-divider--separator-type-pattern:not(.elementor-widget-divider--view-line) .elementor-divider-separator:after,.elementor-widget-divider--separator-type-pattern:not(.elementor-widget-divider--view-line) .elementor-divider-separator:before,.elementor-widget-divider--separator-type-pattern:not([class*=elementor-widget-divider--view]) .elementor-divider-separator{width:100%;min-height:var(--divider-pattern-height);-webkit-mask-size:var(--divider-pattern-size) 100%;mask-size:var(--divider-pattern-size) 100%;-webkit-mask-repeat:var(--divider-pattern-repeat);mask-repeat:var(--divider-pattern-repeat);background-color:var(--divider-color);-webkit-mask-image:var(--divider-pattern-url);mask-image:var(--divider-pattern-url)}.elementor-widget-divider--no-spacing{--divider-pattern-size:auto}.elementor-widget-divider--bg-round{--divider-pattern-repeat:round}.rtl .elementor-widget-divider .elementor-divider__text{direction:rtl}.e-con-inner>.elementor-widget-divider,.e-con>.elementor-widget-divider{width:var(--container-widget-width,100%);--flex-grow:var(--container-widget-flex-grow)}<\/style>\t\t<div class=\"elementor-divider\">\n\t\t\t<span class=\"elementor-divider-separator\">\n\t\t\t\t\t\t<\/span>\n\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<section class=\"elementor-section elementor-inner-section elementor-element elementor-element-a23067f elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"a23067f\" data-element_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-inner-column elementor-element elementor-element-9bb992c\" data-id=\"9bb992c\" data-element_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-f42f61b elementor-widget elementor-widget-image\" data-id=\"f42f61b\" data-element_type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.23.0 - 25-07-2024 *\/\n.elementor-widget-image{text-align:center}.elementor-widget-image a{display:inline-block}.elementor-widget-image a img[src$=\".svg\"]{width:48px}.elementor-widget-image img{vertical-align:middle;display:inline-block}<\/style>\t\t\t\t\t\t\t\t\t\t<img fetchpriority=\"high\" decoding=\"async\" width=\"613\" height=\"612\" src=\"https:\/\/wfh.org\/wp-content\/uploads\/2024\/04\/WHD-wrapiup-2024-Maryam-Waleed-Mahdi-WHD-story.jpg\" class=\"attachment-full size-full wp-image-107992\" alt=\"\" srcset=\"https:\/\/wfh.org\/wp-content\/uploads\/2024\/04\/WHD-wrapiup-2024-Maryam-Waleed-Mahdi-WHD-story.jpg 613w, https:\/\/wfh.org\/wp-content\/uploads\/2024\/04\/WHD-wrapiup-2024-Maryam-Waleed-Mahdi-WHD-story-108x108.jpg 108w\" sizes=\"(max-width: 613px) 100vw, 613px\" \/>\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<div class=\"elementor-column elementor-col-50 elementor-inner-column elementor-element elementor-element-24f186b\" data-id=\"24f186b\" data-element_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-45a5680 elementor-widget elementor-widget-text-editor\" data-id=\"45a5680\" data-element_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<p><strong>Maryam Waleed Mahdi<br \/>\nM\u00e8re d\u2019un enfant atteint d\u2019h\u00e9mophilie A<\/strong><\/p>\n<p>\u00ab\u00a0Aborder la vie avec un enfant atteint d\u2019h\u00e9mophilie, c\u2019est un apprentissage constant, mais faire partie d\u2019une communaut\u00e9 qui nous soutient fait toute la diff\u00e9rence. Nous avons appris \u00e0 c\u00e9l\u00e9brer les petites victoires, \u00e0 appr\u00e9cier les sourires de r\u00e9silience et \u00e0 trouver de la force dans le collectif. En accueillant les progr\u00e8s dans les soins m\u00e9dicaux et en partageant notre sagesse collective, nous continuons \u00e0 avancer avec courage et optimisme.<\/p>\n<p>\u00c0 toutes les m\u00e8res qui font face aux difficult\u00e9s de l\u2019h\u00e9mophilie, sachez que vous n\u2019\u00eates pas seules. Votre force est louable et je suis fi\u00e8re d\u2019\u00eatre \u00e0 vos c\u00f4t\u00e9s. Ensemble, nous rendons hommage \u00e0 la r\u00e9silience de nos enfants et \u00e0 l\u2019espoir que chaque nouveau jour nous apporte, en prouvant que la vie peut \u00eatre v\u00e9cue avec joie et courage, m\u00eame en affrontant l\u2019h\u00e9mophilie.\u00a0\u00bb<\/p>\n<p>Pour lire le r\u00e9cit int\u00e9gral de Maryam Waleed Mahdi (en anglais),\u00a0<a href=\"https:\/\/whdstories.wfh.org\/stories\/maryam-waleed-mahdi\/\" target=\"_blank\" rel=\"noopener\">cliquez ici<\/a>.<\/p>\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 class=\"elementor-element elementor-element-ead75e5 elementor-widget-divider--view-line elementor-widget elementor-widget-divider\" data-id=\"ead75e5\" data-element_type=\"widget\" data-widget_type=\"divider.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-divider\">\n\t\t\t<span class=\"elementor-divider-separator\">\n\t\t\t\t\t\t<\/span>\n\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<section class=\"elementor-section elementor-inner-section elementor-element elementor-element-9ae8e8d elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"9ae8e8d\" data-element_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-inner-column elementor-element elementor-element-9e7b952\" data-id=\"9e7b952\" data-element_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-4ba2718 elementor-widget elementor-widget-video\" data-id=\"4ba2718\" data-element_type=\"widget\" data-settings=\"{&quot;video_type&quot;:&quot;hosted&quot;,&quot;controls&quot;:&quot;yes&quot;}\" data-widget_type=\"video.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.23.0 - 25-07-2024 *\/\n.elementor-widget-video .elementor-widget-container{overflow:hidden;transform:translateZ(0)}.elementor-widget-video .elementor-wrapper{aspect-ratio:var(--video-aspect-ratio)}.elementor-widget-video .elementor-wrapper iframe,.elementor-widget-video .elementor-wrapper video{height:100%;width:100%;display:flex;border:none;background-color:#000}@supports not (aspect-ratio:1\/1){.elementor-widget-video .elementor-wrapper{position:relative;overflow:hidden;height:0;padding-bottom:calc(100% \/ var(--video-aspect-ratio))}.elementor-widget-video .elementor-wrapper iframe,.elementor-widget-video .elementor-wrapper video{position:absolute;top:0;right:0;bottom:0;left:0}}.elementor-widget-video .elementor-open-inline .elementor-custom-embed-image-overlay{position:absolute;top:0;right:0;bottom:0;left:0;background-size:cover;background-position:50%}.elementor-widget-video .elementor-custom-embed-image-overlay{cursor:pointer;text-align:center}.elementor-widget-video .elementor-custom-embed-image-overlay:hover .elementor-custom-embed-play i{opacity:1}.elementor-widget-video .elementor-custom-embed-image-overlay img{display:block;width:100%;aspect-ratio:var(--video-aspect-ratio);-o-object-fit:cover;object-fit:cover;-o-object-position:center center;object-position:center center}@supports not (aspect-ratio:1\/1){.elementor-widget-video .elementor-custom-embed-image-overlay{position:relative;overflow:hidden;height:0;padding-bottom:calc(100% \/ var(--video-aspect-ratio))}.elementor-widget-video .elementor-custom-embed-image-overlay img{position:absolute;top:0;right:0;bottom:0;left:0}}.elementor-widget-video .e-hosted-video .elementor-video{-o-object-fit:cover;object-fit:cover}.e-con-inner>.elementor-widget-video,.e-con>.elementor-widget-video{width:var(--container-widget-width);--flex-grow:var(--container-widget-flex-grow)}<\/style>\t\t<div class=\"e-hosted-video elementor-wrapper elementor-open-inline\">\n\t\t\t\t\t<video class=\"elementor-video\" src=\"https:\/\/whdstories.wfh.org\/wp-content\/uploads\/2025\/03\/Tatiana-WHD-1.mp4\" controls=\"\" preload=\"metadata\" controlsList=\"nodownload\"><\/video>\n\t\t\t\t<\/div>\n\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-inner-column elementor-element elementor-element-7903b9c\" data-id=\"7903b9c\" data-element_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-e471bd3 elementor-widget elementor-widget-text-editor\" data-id=\"e471bd3\" data-element_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<p><strong>Tatiana Bathfield<\/strong><strong><br \/>\n<\/strong><strong>M\u00e8re d\u2019une fille atteinte d\u2019un d\u00e9ficit s\u00e9v\u00e8re en facteur VII<\/strong><\/p>\n<p>Il y a 17 ans, j\u2019ai donn\u00e9 naissance \u00e0 une petite fille atteinte d\u2019un d\u00e9ficit s\u00e9v\u00e8re en facteur VII. Depuis le jour du diagnostic, nos vies ont \u00e9t\u00e9 chamboul\u00e9es. Comme nous n\u2019avions que tr\u00e8s peu (voire pas) d\u2019informations sur ce trouble tr\u00e8s rare de la coagulation, nous sommes entr\u00e9\u00b7es dans un monde qui nous \u00e9tait inconnu, mais qui l\u2019\u00e9tait aussi pour la plupart des professionnel\u00b7les de sant\u00e9.<\/p>\n<p>Pour celles et ceux d\u2019entre vous qui vivent une situation similaire, n\u2019oubliez pas qu\u2019il y a toujours une lumi\u00e8re au bout du tunnel. Entrer en contact avec une vaste communaut\u00e9 des troubles de la coagulation a \u00e9t\u00e9 une bou\u00e9e de sauvetage pour nous.<\/p>\n<p>Pour lire le r\u00e9cit complet de Tatiana Bathfield (en anglais), <a href=\"https:\/\/whdstories.wfh.org\/stories\/tatiana-bathfield\/\" target=\"_blank\" rel=\"noopener\">cliquez ici<\/a><\/p>\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 class=\"elementor-element elementor-element-eb09add elementor-widget-divider--view-line elementor-widget elementor-widget-divider\" data-id=\"eb09add\" data-element_type=\"widget\" data-widget_type=\"divider.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-divider\">\n\t\t\t<span class=\"elementor-divider-separator\">\n\t\t\t\t\t\t<\/span>\n\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<section class=\"elementor-section elementor-inner-section elementor-element elementor-element-e42fdfc elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"e42fdfc\" data-element_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-inner-column elementor-element elementor-element-14d16b7\" data-id=\"14d16b7\" data-element_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-5f48755 elementor-widget elementor-widget-image\" data-id=\"5f48755\" data-element_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<img decoding=\"async\" width=\"400\" height=\"296\" src=\"https:\/\/wfh.org\/wp-content\/uploads\/2023\/04\/Genesis-cedeno-small.jpg\" class=\"attachment-full size-full wp-image-67559\" alt=\"\" srcset=\"https:\/\/wfh.org\/wp-content\/uploads\/2023\/04\/Genesis-cedeno-small.jpg 400w, https:\/\/wfh.org\/wp-content\/uploads\/2023\/04\/Genesis-cedeno-small-146x108.jpg 146w\" sizes=\"(max-width: 400px) 100vw, 400px\" \/>\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<div class=\"elementor-column elementor-col-50 elementor-inner-column elementor-element elementor-element-bdfc65e\" data-id=\"bdfc65e\" data-element_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-406d3b4 elementor-widget elementor-widget-text-editor\" data-id=\"406d3b4\" data-element_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<p><strong>G\u00e9nesis Cede\u00f1o<\/strong><br \/>\n<strong>Personne atteinte de la maladie de Willebrand<\/strong><\/p>\n<p>Je fais partie de la troisi\u00e8me g\u00e9n\u00e9ration atteinte de la [maladie de Willebrand], et j\u2019ai toujours pens\u00e9 qu\u2019il \u00e9tait normal d\u2019\u00eatre an\u00e9mi\u00e9e et d\u2019avoir des saignements tr\u00e8s abondants lors de mes r\u00e8gles\u2026 [mais je me rends compte] qu\u2019il y a des solutions [m\u00e9dicales] pour les personnes comme moi. Je remercie toutes les personnes qui m\u2019ont aid\u00e9e dans mon parcours [\u2026] et qui m\u2019ont appris qu\u2019il \u00e9tait possible d\u2019avoir une bonne qualit\u00e9 de vie malgr\u00e9 les saignements.<\/p>\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 class=\"elementor-element elementor-element-d41c9d7 elementor-widget-divider--view-line elementor-widget elementor-widget-divider\" data-id=\"d41c9d7\" data-element_type=\"widget\" data-widget_type=\"divider.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-divider\">\n\t\t\t<span class=\"elementor-divider-separator\">\n\t\t\t\t\t\t<\/span>\n\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<section class=\"elementor-section elementor-inner-section elementor-element elementor-element-d189def elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"d189def\" data-element_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-inner-column elementor-element elementor-element-7b8d02f\" data-id=\"7b8d02f\" data-element_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-a31a3db elementor-widget elementor-widget-video\" data-id=\"a31a3db\" data-element_type=\"widget\" data-settings=\"{&quot;video_type&quot;:&quot;hosted&quot;,&quot;controls&quot;:&quot;yes&quot;}\" data-widget_type=\"video.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"e-hosted-video elementor-wrapper elementor-open-inline\">\n\t\t\t\t\t<video class=\"elementor-video\" src=\"https:\/\/whdstories.wfh.org\/wp-content\/uploads\/2025\/03\/Eliza-WHD-2025.mp4\" controls=\"\" preload=\"metadata\" controlsList=\"nodownload\"><\/video>\n\t\t\t\t<\/div>\n\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-inner-column elementor-element elementor-element-16695b9\" data-id=\"16695b9\" data-element_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-ca4358f elementor-widget elementor-widget-text-editor\" data-id=\"ca4358f\" data-element_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<p><strong>Eliza VanZweden<\/strong><strong><br \/>\n<\/strong><strong>Personne atteinte d\u2019une thrombasth\u00e9nie de Glanzmann<\/strong><\/p>\n<p>Bien que j\u2019aie \u00e9t\u00e9 diagnostiqu\u00e9e tr\u00e8s jeune, j\u2019ai de fr\u00e9quents saignements aigus qui m\u2019obligent \u00e0 aller aux urgences pour des transfusions de plaquettes, ce qui est ma seule possibilit\u00e9 de traitement. Je suis sans arr\u00eat en train d\u2019expliquer ma maladie \u00e0 des m\u00e9decins urgentistes qui ne comprennent pas, et m\u2019envoient parfois pa\u00eetre.<\/p>\n<p>J\u2019encourage toutes les personnes qui se sentent isol\u00e9es \u00e0 entrer en lien avec une communaut\u00e9 d\u2019autres femmes et filles atteintes d\u2019un trouble de la coagulation. N\u2019abandonnez pas avant d\u2019avoir trouv\u00e9 un\u00b7e professionnel\u00b7le de sant\u00e9 qui vous prendra au s\u00e9rieux.<\/p>\n<p>Pour lire le r\u00e9cit complet d\u2019Eliza VanZweden (en anglais), <a href=\"https:\/\/whdstories.wfh.org\/stories\/eliza-vanzweden-2\/\" target=\"_blank\" rel=\"noopener\">cliquez ici<\/a>.<\/p>\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 class=\"elementor-element elementor-element-194128d elementor-widget-divider--view-line elementor-widget elementor-widget-divider\" data-id=\"194128d\" data-element_type=\"widget\" data-widget_type=\"divider.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<div class=\"elementor-divider\">\n\t\t\t<span class=\"elementor-divider-separator\">\n\t\t\t\t\t\t<\/span>\n\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<section class=\"elementor-section elementor-inner-section elementor-element elementor-element-c3cd51b elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"c3cd51b\" data-element_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-inner-column elementor-element elementor-element-f6fd961\" data-id=\"f6fd961\" data-element_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-faa9ff9 elementor-widget elementor-widget-image\" data-id=\"faa9ff9\" data-element_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<img decoding=\"async\" width=\"1280\" height=\"853\" src=\"https:\/\/wfh.org\/wp-content\/uploads\/2024\/04\/WHD-wrapiup-2024-Phyo-Khant-Kyaw-WHD-story.jpeg\" class=\"attachment-full size-full wp-image-108002\" alt=\"\" srcset=\"https:\/\/wfh.org\/wp-content\/uploads\/2024\/04\/WHD-wrapiup-2024-Phyo-Khant-Kyaw-WHD-story.jpeg 1280w, https:\/\/wfh.org\/wp-content\/uploads\/2024\/04\/WHD-wrapiup-2024-Phyo-Khant-Kyaw-WHD-story-162x108.jpeg 162w, https:\/\/wfh.org\/wp-content\/uploads\/2024\/04\/WHD-wrapiup-2024-Phyo-Khant-Kyaw-WHD-story-768x512.jpeg 768w\" sizes=\"(max-width: 1280px) 100vw, 1280px\" \/>\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<div class=\"elementor-column elementor-col-50 elementor-inner-column elementor-element elementor-element-51045eb\" data-id=\"51045eb\" data-element_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-0925954 elementor-widget elementor-widget-text-editor\" data-id=\"0925954\" data-element_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<p><strong>Phyo Khant Kyaw<br \/>\n<\/strong><strong>Personne atteinte d\u2019h\u00e9mophilie B<\/strong><\/p>\n<p>\u00ab\u00a0En 1998, j\u2019ai d\u00fb faire face \u00e0 la dure r\u00e9alit\u00e9 de ma condition lorsqu\u2019une simple blessure \u00e0 la gencive a conduit \u00e0 un diagnostic qui a chang\u00e9 ma vie pour toujours. \u00c0 l\u2019\u00e9poque, diagnostiquer un d\u00e9ficit en facteur au Myanmar \u00e9tait tr\u00e8s difficile, et j\u2019avais d\u00e9j\u00e0 eu plus de mille transfusions sanguines.<\/p>\n<p>L\u2019un des moments les plus difficiles de mon parcours a \u00e9t\u00e9 une h\u00e9morragie intracr\u00e2nienne lorsque j\u2019\u00e9tais enfant. La peur a d\u00e9ferl\u00e9 sur moi comme une vague, je ne pouvais plus parler et je ne voyais plus la lumi\u00e8re. Cependant, gr\u00e2ce \u00e0 un traitement et aux soins de la professeure Aye Aye Khaing, j\u2019ai gu\u00e9ri en deux semaines.<\/p>\n<p>Ma reconnaissance envers la F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie (FMH) est immense, car elle m\u2019a sauv\u00e9 la vie ainsi que celle de bien d\u2019autres personnes souffrant de cette maladie. Gr\u00e2ce \u00e0 ses initiatives et \u00e0 ses actions de plaidoyer, des individus comme moi ont pu retrouver une vie, de l\u2019espoir et un avenir meilleur.\u00a0\u00bb<\/p>\n<p>Pour lire le r\u00e9cit int\u00e9gral de Phyo Khant Kyaw (en anglais),\u00a0<a href=\"https:\/\/whdstories.wfh.org\/stories\/phyo-khant-kyaw\/\" target=\"_blank\" rel=\"noopener\">cliquez ici<\/a>.<\/p>\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 class=\"elementor-element elementor-element-89da5ba elementor-widget elementor-widget-text-editor\" data-id=\"89da5ba\" data-element_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<p>Pour en savoir plus sur la Journ\u00e9e mondiale de l\u2019h\u00e9mophilie, <a href=\"https:\/\/wfh.org\/fr\/journee-mondiale-de-lhemophilie\/\" target=\"_blank\" rel=\"noopener\">c\u2019est ici<\/a>. Pour acc\u00e9der au site de la Journ\u00e9e mondiale de l\u2019h\u00e9mophilie d\u00e9di\u00e9 aux r\u00e9cits, <a href=\"https:\/\/whdstories.wfh.org\/\" target=\"_blank\" rel=\"noopener\">cliquez ici<\/a>.<\/p>\n<p><em>La FMH tient \u00e0 remercier les contributeurs \u00e0 la Journ\u00e9e mondiale de l\u2019h\u00e9mophilie 2025 pour leur soutien sans faille\u00a0:<\/em>\u00a0<em>Bayer, BioMarin Pharmaceutical Inc, Biotest, CSL Behring, F. Hoffman-La Roche Ltd, GC Pharma, Grifols, Kedrion, LFB S.A, Novo Nordisk, Octapharma, Pfizer, Sanofi, Sobi et Takeda.<\/em><\/p>\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>Le mois prochain, la communaut\u00e9 mondiale des troubles de la coagulation s\u2019unira pour f\u00eater la Journ\u00e9e mondiale de l\u2019h\u00e9mophilie le 17 avril 2025. Le th\u00e8me cette ann\u00e9e est \u00ab Acc\u00e8s pour tous : les femmes et les filles saignent aussi \u00bb. Aujourd\u2019hui, les femmes et les filles atteintes d\u2019un trouble de la coagulation sont encore sous-diagnostiqu\u00e9es et mal prises en charge. Gr\u00e2ce \u00e0 la reconnaissance, au diagnostic, au traitement et aux soins, la qualit\u00e9 de vie des femmes et des filles s\u2019am\u00e9liorera, et la communaut\u00e9 des troubles de la coagulation s\u2019en verra renforc\u00e9e. La F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie (FMH) vient de mettre en ligne le site de la Journ\u00e9e mondiale de l\u2019h\u00e9mophilie d\u00e9di\u00e9e aux r\u00e9cits : si vous (ou quelqu\u2019un que vous connaissez) souhaitez partager votre histoire en lien avec les troubles h\u00e9r\u00e9ditaires de la coagulation, c\u2019est le moment !<\/p>\n","protected":false},"author":13,"featured_media":135982,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[193],"tags":[],"search-category":[85],"class_list":["post-136201","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-journee-mondiale-de-lhemophilie","search-category-article"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v23.4 (Yoast SEO v23.4) - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Le site de la Journ\u00e9e mondiale de l\u2019h\u00e9mophilie 2025 d\u00e9di\u00e9 aux r\u00e9cits est en ligne ! | FMH - F\u00e9d\u00e9ration mondiale de l\u2019h\u00e9mophilie<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/wfh.org\/fr\/article\/le-site-de-la-journee-mondiale-de-lhemophilie-2025-dedie-aux-recits-est-en-ligne\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Le site de la Journ\u00e9e mondiale de l\u2019h\u00e9mophilie 2025 d\u00e9di\u00e9 aux r\u00e9cits est en ligne !\" \/>\n<meta property=\"og:description\" content=\"Le mois prochain, la communaut\u00e9 mondiale des troubles de la coagulation s\u2019unira pour f\u00eater la Journ\u00e9e mondiale de l\u2019h\u00e9mophilie le 17 avril 2025. Le th\u00e8me cette ann\u00e9e est \u00ab Acc\u00e8s pour tous : les femmes et les filles saignent aussi \u00bb. Aujourd\u2019hui, les femmes et les filles atteintes d\u2019un trouble de la coagulation sont encore sous-diagnostiqu\u00e9es et mal prises en charge. Gr\u00e2ce \u00e0 la reconnaissance, au diagnostic, au traitement et aux soins, la qualit\u00e9 de vie des femmes et des filles s\u2019am\u00e9liorera, et la communaut\u00e9 des troubles de la coagulation s\u2019en verra renforc\u00e9e. 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