{"id":68786,"date":"2024-10-04T12:47:19","date_gmt":"2024-10-04T10:47:19","guid":{"rendered":"https:\/\/www.ipsen.com\/?p=68786"},"modified":"2025-05-30T13:26:39","modified_gmt":"2025-05-30T11:26:39","slug":"accompagnement-dun-etre-cher-souffrant-de-cholestase-intrahepatique-familiale-progressive-cifp-lhistoire-de-francesca","status":"publish","type":"post","link":"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/accompagnement-dun-etre-cher-souffrant-de-cholestase-intrahepatique-familiale-progressive-cifp-lhistoire-de-francesca\/","title":{"rendered":"Accompagnement d\u2019un \u00eatre cher souffrant de cholestase intrah\u00e9patique familiale progressive (CIFP) : l\u2019histoire de Francesca"},"content":{"rendered":"\n<p><em>Quelques mois apr\u00e8s la naissance d\u2019Eva Luna, sa m\u00e8re Francesca a r\u00e9alis\u00e9 que quelque chose n\u2019allait pas. En quelques jours, leur monde a bascul\u00e9 : sa fille \u00e9tait atteinte d\u2019une maladie h\u00e9patique rare, connue sous le nom de cholestase intrah\u00e9patique familiale progressive (CIFP). Aujourd\u2019hui \u00e2g\u00e9e de cinq ans, Eva Luna est d\u00e9crite par sa m\u00e8re comme un \u00ab miracle \u00bb : elle s\u2019\u00e9panouit, danse et a r\u00e9cemment commenc\u00e9 l\u2019\u00e9cole.<\/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=\"IPSEN-Rome-FrancescaEvaLuna-VSTVF--10Mbps\" src=\"https:\/\/player.vimeo.com\/video\/1016097485?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 les premi\u00e8res semaines suivant sa naissance, tout semblait normal. \u00ab <em>Et puis, \u00e0 deux mois et demi, la couleur de ses yeux et de sa peau a chang\u00e9, et elle avait de fortes diarrh\u00e9es.<\/em> \u00bb Un passage aux urgences s\u2019imposa, et deux jours plus tard, les m\u00e9decins prononc\u00e8rent le diagnostic qui allait bouleverser leur vie : \u00ab<em> Je pense qu\u2019il s\u2019agit d\u2019une cholestase intrah\u00e9patique familiale progressive. <\/em>\u00bb&nbsp;<\/p>\n\n\n\n<p>Francesca raconte qu\u2019apr\u00e8s le choc du diagnostic, elle est tomb\u00e9e dans une profonde d\u00e9pression et n\u2019a pas pu s\u2019occuper d\u2019Eva Luna pendant plusieurs mois. Durant cette p\u00e9riode, son mari Simone a tout fait pour faire tenir la famille et continuer \u00e0 faire sourire leur fille.&nbsp;<\/p>\n\n\n\n<p>La CIFP est une maladie h\u00e9patique rare, qui pose des d\u00e9fis importants, en particulier chez les jeunes enfants. Ce spectre de troubles g\u00e9n\u00e9tiques provoque une accumulation de bile dans le foie. Sans prise en charge, la CIFP peut \u00e9voluer vers une insuffisance h\u00e9patique terminale et n\u00e9cessiter une greffe de foie.&nbsp;<\/p>\n\n\n\n<p>Le sympt\u00f4me le plus p\u00e9nible est le prurit (d\u00e9mangeaisons intol\u00e9rables), qui peut \u00eatre si intense qu\u2019il entra\u00eene une mutilation de la peau, une perte de sommeil, de l\u2019irritabilit\u00e9, des troubles de l\u2019attention et une baisse des performances scolaires. C\u2019\u00e9tait le cas d\u2019Eva Luna. Francesca confie que les d\u00e9mangeaisons \u00e9taient \u00ab <em>le sympt\u00f4me le plus important et le plus difficile<\/em> \u00bb.<\/p>\n\n\n\n<p><strong>\u00ab <em>En grandissant, ses d\u00e9mangeaisons grandissaient aussi. Elles d\u00e9voraient notre vie, comme un monstre.<\/em> \u00bb &#8211; <\/strong>Francesca&nbsp;<\/p>\n\n\n\n<p>Une chirurgie r\u00e9ussie, appel\u00e9e d\u00e9rivation biliaire interne, a permis de mieux contr\u00f4ler les d\u00e9mangeaisons d\u2019Eva Luna \u2013 un v\u00e9ritable tournant. \u00ab <em>Elle a maintenant la chance d\u2019aller \u00e0 l\u2019\u00e9cole, de danser et de faire tout ce qu\u2019elle veut. <\/em>\u00bb&nbsp;<\/p>\n\n\n\n<p>Le diagnostic et le traitement ont profond\u00e9ment boulevers\u00e9 la vie de toute la famille, y compris celle de son grand fr\u00e8re Ernesto, plus \u00e2g\u00e9 de cinq ans. Les fr\u00e8res et s\u0153urs d\u2019enfants atteints de maladies rares doivent souvent faire face \u00e0 des \u00e9motions complexes : solitude, anxi\u00e9t\u00e9, confusion face \u00e0 l\u2019attention port\u00e9e \u00e0 l\u2019autre. Mais ils sont aussi une source de force. \u00ab <em>Le plus grand rem\u00e8de contre les d\u00e9mangeaisons, c\u2019est de la garder occup\u00e9e. C\u2019est Ernesto qui l\u2019a compris en premier. Ils jouent&nbsp; beaucoup ensemble, ils se disputent aussi. Elle a besoin de lui plus que de moi ou de son p\u00e8re.<\/em> \u00bb Leur lien est fait d\u2019amour, de rires et de r\u00e9silience \u2013 un rappel que les fr\u00e8res et s\u0153urs peuvent \u00eatre un pilier dans les familles vivant avec une maladie rare.&nbsp;<\/p>\n\n\n\n<p>Francesca a compris, au fil de son exp\u00e9rience, \u00e0 quel point le lien avec d\u2019autres parents est vital: \u00ab<em> Le contact avec d\u2019autres m\u00e8res dans le monde entier a \u00e9t\u00e9 tr\u00e8s important pour moi. Cela m\u2019a redonn\u00e9 de l\u2019espoir, car j\u2019ai vu leurs enfants grandir, aller \u00e0 l\u2019\u00e9cole et m\u00eame avoir une vie normale.<\/em>\u00bb C\u2019est pour cette raison qu\u2019a \u00e9t\u00e9 fond\u00e9e l\u2019association PFIC Italia Network : pour que les familles touch\u00e9es par une maladie h\u00e9patique rare ne se sentent pas seules.&nbsp;<\/p>\n\n\n\n<p>\u00ab <em>Je me suis promis que, puisque cela nous \u00e9tait arriv\u00e9, je devais utiliser toute mon \u00e9nergie pour aider d\u2019autres m\u00e8res \u00e0 ne pas se sentir aussi seules.<\/em> \u00bb&nbsp;<\/p>\n\n\n\n<p>Pour en savoir plus sur la CIFP, consultez le site Web du PFIC Network : <strong><a href=\"https:\/\/www.pfic.org\/\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/www.pfic.org<\/a>&nbsp;<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Quelques mois apr\u00e8s la naissance d\u2019Eva Luna, sa m\u00e8re Francesca a r\u00e9alis\u00e9 que quelque chose n\u2019allait pas. En quelques jours,<\/p>\n","protected":false},"author":11,"featured_media":68780,"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-68786","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>Accompagnement d\u2019un \u00eatre cher souffrant de cholestase intrah\u00e9patique familiale progressive (CIFP) : l\u2019histoire de Francesca - Global<\/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:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/accompagnement-dun-etre-cher-souffrant-de-cholestase-intrahepatique-familiale-progressive-cifp-lhistoire-de-francesca\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Accompagnement d\u2019un \u00eatre cher souffrant de cholestase intrah\u00e9patique familiale progressive (CIFP) : l\u2019histoire de Francesca - Global\" \/>\n<meta property=\"og:description\" content=\"Quelques mois apr\u00e8s la naissance d\u2019Eva Luna, sa m\u00e8re Francesca a r\u00e9alis\u00e9 que quelque chose n\u2019allait pas. 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