{"id":86676,"date":"2025-09-08T09:29:47","date_gmt":"2025-09-08T07:29:47","guid":{"rendered":"https:\/\/www.ipsen.com\/?p=86676"},"modified":"2025-09-08T09:30:25","modified_gmt":"2025-09-08T07:30:25","slug":"reconnaitre-les-signes-precocement-ameliorer-les-resultats-pour-les-enfants-atteints-de-maladies-rares-du-foie","status":"publish","type":"post","link":"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/reconnaitre-les-signes-precocement-ameliorer-les-resultats-pour-les-enfants-atteints-de-maladies-rares-du-foie\/","title":{"rendered":"Reconna\u00eetre les signes pr\u00e9cocement : am\u00e9liorer les r\u00e9sultats pour les enfants atteints de maladies rares du foie\u00a0"},"content":{"rendered":"\n<p>Lors d\u2019une r\u00e9cente conversation, le professeur Bj\u00f6rn Fischler, h\u00e9patologue p\u00e9diatrique \u00e0 l\u2019Institut Karolinska en Su\u00e8de, et Laure Dorey, directrice de l\u2019association fran\u00e7aise de patients AMFE et m\u00e8re d\u2019un enfant atteint d\u2019atr\u00e9sie des voies biliaires (AVB), ont \u00e9chang\u00e9 sur la r\u00e9alit\u00e9 de la vie avec une maladie rare du foie (MRF) et sur l\u2019importance d\u2019un d\u00e9pistage pr\u00e9coce.\u00a0<\/p>\n\n\n    <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=\"ESPGHAN Ipsen.com video 1\" src=\"https:\/\/player.vimeo.com\/video\/1116683097?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>Les MRF, notamment la cholestase intrah\u00e9patique familiale progressive (PFIC), le syndrome d\u2019Alagille et l\u2019AVB, sont des maladies chroniques et complexes qui ont un impact profond sur les enfants et leurs familles.&nbsp;<\/p>\n\n\n\n<p>ouvent, dans le cas des MRF, l\u2019\u00e9coulement de la bile du foie vers le tube digestif est perturb\u00e9, une affection appel\u00e9e cholestase. Lorsque la bile reste pi\u00e9g\u00e9e dans le foie, elle provoque une inflammation, pouvant entra\u00eener des cicatrices et une d\u00e9gradation progressive de la fonction h\u00e9patique.<sup>i<\/sup> Les acides biliaires, composants cl\u00e9s de la bile, peuvent s\u2019accumuler dans le sang, p\u00e9n\u00e9trer la peau et irriter les terminaisons nerveuses.<sup>ii<\/sup><sup>,<\/sup><sup>iii<\/sup>&nbsp;<\/p>\n\n\n\n<p>L\u2019un des d\u00e9fis du diagnostic des MRF est que les premiers sympt\u00f4mes peuvent \u00eatre subtils ou trompeurs. Des signes tels que des selles d\u00e9color\u00e9es, une jaunisse (jaunissement de la peau et des yeux) ou un prurit (d\u00e9mangeaisons) sont souvent n\u00e9glig\u00e9s ou confondus avec des affections infantiles plus courantes.<sup>iv<\/sup>&nbsp;<\/p>\n\n\n\n<p><em>\u00ab Les signes les plus importants chez le tr\u00e8s jeune enfant seraient la jaunisse\u2026 Chez un nourrisson un peu plus \u00e2g\u00e9, il peut s\u2019agir de d\u00e9mangeaisons ou de prurit. \u00bb \u2013 Professeur Bj\u00f6rn Fischler&nbsp;<\/em>&nbsp;<\/p>\n\n\n    <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=\"ESPGHAN Ipsen.com video 2\" src=\"https:\/\/player.vimeo.com\/video\/1116682976?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>Dans l\u2019AVB, le facteur temps est essentiel. Une chirurgie permettant de r\u00e9tablir l\u2019\u00e9coulement de la bile dans les premi\u00e8res semaines de vie peut consid\u00e9rablement am\u00e9liorer le pronostic.<sup>v<\/sup> Pour la PFIC, un diagnostic pr\u00e9coce permet de mettre en place des plans de soins personnalis\u00e9s, capables de soulager les sympt\u00f4mes invalidants de prurit et de pr\u00e9server la fonction h\u00e9patique.<sup>vi<\/sup>\u00a0<\/p>\n\n\n    <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=\"ESPGHAN Ipsen.com video 3\" src=\"https:\/\/player.vimeo.com\/video\/1116683077?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>L\u2019impact des MRF va au-del\u00e0 de la sant\u00e9 physique. Les enfants souffrant d\u2019un prurit intense rencontrent souvent des difficult\u00e9s de sommeil, d\u2019app\u00e9tit, de croissance et d\u2019\u00e9nergie.<sup>vii<\/sup> <em>\u00ab Ils ne dorment pas la nuit, peut-\u00eatre qu\u2019ils ne mangent pas correctement, et peut-\u00eatre qu\u2019ils ne grandissent pas correctement \u00bb, explique le professeur Fischler. \u00ab Ils ont donc tendance \u00e0 \u00eatre un peu plus faibles et moins motiv\u00e9s pour pratiquer diff\u00e9rentes activit\u00e9s. \u00bb&nbsp;<\/em>&nbsp;<\/p>\n\n\n\n<p>Ces difficult\u00e9s touchent \u00e9galement toute la famille. Les parents sont souvent confront\u00e9s \u00e0 un stress \u00e9motionnel, \u00e0 un manque de sommeil et \u00e0 des exigences de soins constantes.\u00a0<br>\u00ab <em>C\u2019est en r\u00e9alit\u00e9 pr\u00e9judiciable \u00e0 l\u2019ensemble du syst\u00e8me familial<\/em> \u00bb, ajoute-t-il.\u00a0\u00a0<\/p>\n\n\n    <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=\"ESPGHAN Ipsen.com video 4\" src=\"https:\/\/player.vimeo.com\/video\/1116683022?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>Soutenir les familles avec des informations claires, fiables et des soins coh\u00e9rents est essentiel. Les MRF sont complexes, ce qui signifie que les aidants doivent \u00eatre bien inform\u00e9s et proactifs pour d\u00e9fendre efficacement les besoins de leur enfant. L\u2019acc\u00e8s \u00e0 une information de confiance et une communication ouverte permet aux familles de se sentir plus confiantes et mieux pr\u00e9par\u00e9es \u00e0 g\u00e9rer la prise en charge.<em>&nbsp;<\/em>&nbsp;<\/p>\n\n\n\n<p><em>\u00ab Les parents doivent sentir qu\u2019ils sont \u00e9cout\u00e9s et qu\u2019ils sont soutenus. \u00bb \u2013 Laure Dorey&nbsp;<\/em>&nbsp;<\/p>\n\n\n\n<p>Ipsen s\u2019engage \u00e0 am\u00e9liorer les r\u00e9sultats pour les personnes touch\u00e9es par les maladies rares du foie. En travaillant main dans la main avec la communaut\u00e9, nous approfondissons notre compr\u00e9hension de ce qui compte le plus pour les familles et de la mani\u00e8re de r\u00e9pondre au mieux \u00e0 leurs besoins. Gr\u00e2ce \u00e0 cette collaboration, nous nous effor\u00e7ons d\u2019am\u00e9liorer la vie et de transformer l\u2019avenir des personnes vivant avec une maladie rare du foie.&nbsp;<\/p>\n\n\n\n<p><em>Le professeur Bj\u00f6rn Fischler et Laure Dorey ont \u00e9t\u00e9 r\u00e9mun\u00e9r\u00e9s par Ipsen pour leur temps.<\/em>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Lors d\u2019une r\u00e9cente conversation, le professeur Bj\u00f6rn Fischler, h\u00e9patologue p\u00e9diatrique \u00e0 l\u2019Institut Karolinska en Su\u00e8de, et Laure Dorey, directrice de<\/p>\n","protected":false},"author":97,"featured_media":86672,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[1192],"tags":[],"class_list":["post-86676","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 v26.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Reconna\u00eetre les signes pr\u00e9cocement : am\u00e9liorer les r\u00e9sultats pour les enfants atteints de maladies rares du foie\u00a0 - Global<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" 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