{"id":83046,"date":"2025-07-07T16:10:25","date_gmt":"2025-07-07T14:10:25","guid":{"rendered":"https:\/\/www.ipsen.com\/?p=83046"},"modified":"2025-07-21T15:43:37","modified_gmt":"2025-07-21T13:43:37","slug":"un-parcours-de-force-et-despoir-lhistoire-de-joris-et-maria","status":"publish","type":"post","link":"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/un-parcours-de-force-et-despoir-lhistoire-de-joris-et-maria\/","title":{"rendered":"Un parcours de force et d&rsquo;espoir : l&rsquo;histoire de Joris et Maria"},"content":{"rendered":"    <section class=\"video-card \">\n        <div class=\"container\">\n            <!-- Block Details -->\n            <div class=\"video-card-header\">\n                <h3 class=\"video-card-block-title hidden heading-three\">\n                                    <\/h3>\n                <p class=\"charcoal-grey video-card-block-summary hidden\"> \n                                    <\/p>\n            <\/div>\n\n            <!-- Video Iframe embed -->\n                            <div class=\"video-embed\"> \n                <iframe loading=\"lazy\" title=\"4505_IPSEN_Maria-Joris-V6_STFR\" src=\"https:\/\/player.vimeo.com\/video\/1099369652?app_id=122963&#038;autoplay=1&#038;muted=1&#038;controls=1&#038;loop=1&#038;autopause=1&#038;background=0\" width=\"640\" height=\"360\" frameborder=\"0\" allow=\"autoplay; fullscreen; picture-in-picture; clipboard-write; encrypted-media; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" frameborder=\"0\" allow=\"autoplay; fullscreen; picture-in-picture\" data-ot-ignore><\/iframe>                <\/div>\n            \n            <!-- Block CTA -->\n            <div class=\"cta-block hidden\">\n                            <\/div>\n\n        <\/div>\n    <\/section>\n\n\n\n<p>Joris est un gar\u00e7on de sept ans et demi, plein de vie, dont le parcours a exig\u00e9 beaucoup de force et espoir &#8211; de sa part comme de celle de ses proches. \u00c0 seulement quatre semaines, Joris a commenc\u00e9 \u00e0 pr\u00e9senter des sympt\u00f4mes inhabituels : vomissements, changements dans ses habitudes alimentaires, et des selles tr\u00e8s p\u00e2les. Inqui\u00e8te, sa m\u00e8re, Maria, l\u2019a emmen\u00e9 voir un p\u00e9diatre. Incapable d\u2019identifier le probl\u00e8me, celui-ci les a orient\u00e9s vers un h\u00f4pital sp\u00e9cialis\u00e9 en h\u00e9patologie p\u00e9diatrique. Une prise de sang a r\u00e9v\u00e9l\u00e9 des valeurs h\u00e9patiques anormales, n\u00e9cessitant une hospitalisation urgente pour approfondir le diagnostic.<\/p>\n\n\n\n<p>Les m\u00e9decins ont suspect\u00e9 une atr\u00e9sie des voies biliaires \u2014 une maladie du foie rare touchant les nourrissons, qui provoque une obstruction des canaux. Les sympt\u00f4mes incluent une jaunisse persistante, un foie durci, un abdomen gonfl\u00e9, des selles claires et urine fonc\u00e9e, qui durent au-del\u00e0 des deux premi\u00e8res semaines de vie.<\/p>\n\n\n\n<p>Les m\u00e9decins ont r\u00e9alis\u00e9 une intervention exploratoire : si le foie de Joris paraissait sain, certaines inqui\u00e9tudes subsistaient.<\/p>\n\n\n\n<p><em><strong>\u00ab Je me sentais angoiss\u00e9e et je ne comprenais pas vraiment ce qui se passait. C\u2019\u00e9tait tr\u00e8s difficile en tant que m\u00e8re. \u00bb<\/strong><\/em><\/p>\n\n\n\n<p>\u00c0 trois mois, un examen crucial a confirm\u00e9 le diagnostic : atr\u00e9sie des voies biliaires. \u00c0 cet \u00e2ge, les m\u00e9decins ont jug\u00e9 qu\u2019il \u00e9tait trop tard pour l\u2019intervention de Kasai, une op\u00e9ration qui redirige la bile hors du foie. La seule chance de survie pour Joris \u00e9tait une greffe de foie.<\/p>\n\n\n\n<p>Maria et son mari ont alors envisag\u00e9 la possibilit\u00e9 de devenir donneurs vivants, et les tests ont confirm\u00e9 que Maria \u00e9tait compatible.<\/p>\n\n\n\n<p>Lorsque l\u2019\u00e9tat de Joris s\u2019est aggrav\u00e9, ils ont pris la d\u00e9cision difficile mais n\u00e9cessaire de proc\u00e9der \u00e0 la greffe. L\u2019op\u00e9ration a eu lieu le 4 d\u00e9cembre et a \u00e9t\u00e9 un succ\u00e8s. Mais des complications ont suivi : sa v\u00e9sicule biliaire a \u00e9t\u00e9 retir\u00e9e et ses canaux biliaires ajust\u00e9s, entra\u00eenant des difficult\u00e9s post-op\u00e9ratoires. Des drains ont \u00e9t\u00e9 n\u00e9cessaires pendant un an pour soutenir sa gu\u00e9rison, mais il a fini par se r\u00e9tablir.<\/p>\n\n\n\n<p>Aujourd\u2019hui, ses cicatrices \u2013 qu\u2019il ne remarque m\u00eame plus &#8211; racontent une histoire de r\u00e9silience.Il croque la vie \u00e0 pleines dents, r\u00e9ussit \u00e0 l\u2019\u00e9cole, adore nager et s\u2019est &nbsp;d\u00e9couvert une passion pour le baseball. Son parcours, marqu\u00e9 par l\u2019incertitude et la pers\u00e9v\u00e9rance, a fait de lui un enfant fort et d\u00e9termin\u00e9.<\/p>\n\n\n\n<p>Maria repense \u00e0 cette exp\u00e9rience avec gratitude \u2014 envers les progr\u00e8s m\u00e9dicaux, le soutien de sa famille, et l\u2019acc\u00e8s \u00e0 l\u2019information. Gr\u00e2ce \u00e0 ses recherches, elle a mieux compris la maladie. Cette connaissance a att\u00e9nu\u00e9 le choc du diagnostic et lui a permis de prendre des d\u00e9cisions \u00e9clair\u00e9es, en toute confiance.                                                                                          <\/p>\n\n\n\n<!--Alert Card Layout Start Here-->\n<section class=\"alertcard-section\">\n      <div class=\"container\">\n        <!--Alert Box HTML Start Here-->\n        <div class=\"alert-box general-box\">\n                  <div class=\"info-contents\">\n            <h4 class=\"info-head heading-four heading-four\">R\u00e9f\u00e9rences<\/h4>\n            <p class=\"info-sub-head-para hidden heading-para\"><\/p>\n            <div class=\"alert-content visible\"><ol>\n<li>Antala S &amp; Taylor SA.\u00a0<em>Clin Liver Dis <\/em>2022;26:341\u2013354.\u200b<\/li>\n<\/ol>\n<\/div>\n          <\/div>\n        <\/div>\n        <!--Alert Box HTML Start Here-->\n      <\/div>\n    <\/section>\n<!--Alert Card Layout End Here-->\n","protected":false},"excerpt":{"rendered":"<p>Joris est un gar\u00e7on de sept ans et demi, plein de vie, dont le parcours a exig\u00e9 beaucoup de force<\/p>\n","protected":false},"author":97,"featured_media":83050,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[1192],"tags":[],"class_list":["post-83046","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rare-diseases-fr","entry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.9 - 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