{"id":68786,"date":"2024-10-04T12:47:19","date_gmt":"2024-10-04T10:47:19","guid":{"rendered":"https:\/\/www.ipsen.com\/?p=68786"},"modified":"2024-10-05T12:26:20","modified_gmt":"2024-10-05T10:26:20","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\/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 lorsqu\u2019il s\u2019est av\u00e9r\u00e9 que sa fille \u00e9tait atteinte d\u2019une maladie h\u00e9patique rare, connue sous le nom de cholestase intrah\u00e9patique familiale progressive (CIFP). Malgr\u00e9 cela, Francesca d\u00e9crit sa fille comme son \u00ab miracle \u00bb, Eva Luna, aujourd\u2019hui \u00e2g\u00e9e de cinq ans, s\u2019\u00e9panouit, danse et a r\u00e9cemment commenc\u00e9 l\u2019\u00e9cole. <\/em><\/p>\n\n\n\n<figure class=\"wp-block-video\"><video controls src=\"https:\/\/www.ipsen.com\/websites\/ipsen_com_v2\/wp-content\/uploads\/2024\/10\/05121946\/ipsen-rome-francescaevaluna-vtsang-10mbps-540p.mp4\"><\/video><\/figure>\n\n\n\n<p>Au cours des premi\u00e8res semaines apr\u00e8s la naissance d\u2019Eva Luna, tout allait bien. \u00ab Puis, \u00e0 deux mois et demi, la couleur de ses yeux et de sa peau a chang\u00e9, et elle a commenc\u00e9 \u00e0 souffrir de diarrh\u00e9e fr\u00e9quente. \u00bb Cela a entra\u00een\u00e9 une visite aux urgences, et deux jours plus tard, les m\u00e9decins ont prononc\u00e9 les mots qui allaient changer la vie d\u2019Eva Luna pour toujours : \u00ab Je pense qu\u2019il s\u2019agit d\u2019une cholestase intrah\u00e9patique familiale progressive. \u00bb<\/p>\n\n\n\n<p>Francesca explique qu\u2019apr\u00e8s le choc initial du diagnostic de sa fille, elle a sombr\u00e9 dans une p\u00e9riode de d\u00e9pression et n\u2019a pas pu s\u2019occuper d\u2019Eva Luna pendant les premiers mois apr\u00e8s avoir re\u00e7u le diagnostic. Son mari, Simone, a alors soutenu la famille et a continu\u00e9 \u00e0 faire sourire Eva Luna.<\/p>\n\n\n\n<p>La cholestase intrah\u00e9patique familiale progressive (CIFP) est une maladie h\u00e9patique rare qui peut \u00eatre \u00e0 l\u2019origine de probl\u00e8mes importants, en particulier chez les jeunes enfants. Ce spectre de troubles g\u00e9n\u00e9tiques provoque une accumulation de bile dans le foie. Si la CIFP n\u2019est pas prise en charge, elle peut entra\u00eener une insuffisance h\u00e9patique terminale et n\u00e9cessiter une transplantation h\u00e9patique.<\/p>\n\n\n\n<p>Le prurit (d\u00e9mangeaisons intol\u00e9rables) est le sympt\u00f4me le plus p\u00e9nible de la CIFP et, dans certains cas, peut \u00eatre si important qu\u2019il entra\u00eene une mutilation cutan\u00e9e, une perte de sommeil, une irritabilit\u00e9, un manque d\u2019attention et une alt\u00e9ration des r\u00e9sultats scolaires. C\u2019\u00e9tait le cas d\u2019Eva Luna. Francesca explique que le prurit est \u00ab le sympt\u00f4me le plus important et le plus difficile \u00bb. Elle a \u00e9galement ajout\u00e9, \u00ab au fur et \u00e0 mesure de sa [Eva Luna] croissance, les d\u00e9mangeaisons augmentaient. Les d\u00e9mangeaisons d\u00e9voraient notre vie, comme un monstre. \u00bb<\/p>\n\n\n\n<p>\u00c0 la suite d\u2019une intervention chirurgicale r\u00e9alis\u00e9e avec succ\u00e8s, appel\u00e9e d\u00e9rivation biliaire interne, les d\u00e9mangeaisons d\u2019Eva Luna sont devenues plus g\u00e9rables, ce qui a chang\u00e9 sa vie. \u00ab Elle a maintenant la chance d\u2019aller \u00e0 l\u2019\u00e9cole, de danser et de faire toutes les activit\u00e9s qu\u2019elle souhaite. \u00bb<\/p>\n\n\n\n<p>Le diagnostic et le traitement d\u2019Eva Luna ont eu un impact qui a chang\u00e9 la vie de toute la famille, et, pour cette raison, Francesca souligne que \u00ab le contact avec d\u2019autres m\u00e8res du monde entier a \u00e9t\u00e9 tr\u00e8s important pour moi. Cela m\u2019a redonn\u00e9 de l\u2019espoir, car j\u2019ai vu que leurs enfants grandissaient, allaient \u00e0 l\u2019\u00e9cole et menaient m\u00eame une vie normale.&nbsp;\u00bb L\u2019association PFIC Italia Network a \u00e9t\u00e9 cr\u00e9\u00e9e dans ce but, afin que les familles touch\u00e9es par une maladie h\u00e9patique rare ne se sentent pas seules.<\/p>\n\n\n\n<p>\u00ab Je me suis promis que, comme nous l\u2019avons v\u00e9cu, je devais utiliser toute mon \u00e9nergie pour aider d\u2019autres m\u00e8res \u00e0 ne pas se sentir aussi seules. \u00bb Ce message est plus important que jamais alors que nous c\u00e9l\u00e9brons la Journ\u00e9e de sensibilisation \u00e0 la CIFP, le 5 octobre, organis\u00e9e par PFIC Network, et nous continuerons \u00e0 sensibiliser les gens au-del\u00e0.<\/p>\n\n\n\n<p>Pour en savoir plus sur la CIFP, visitez le site Web de PFIC Network, ici&nbsp;: <a href=\"https:\/\/www.pfic.org\"><strong>https:\/\/www.pfic.org<\/strong><\/a><\/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,"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 v22.5 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\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\/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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