{"id":72828,"date":"2025-03-26T17:37:27","date_gmt":"2025-03-26T15:37:27","guid":{"rendered":"https:\/\/www.ipsen.com\/?p=72828"},"modified":"2025-05-09T10:17:34","modified_gmt":"2025-05-09T08:17:34","slug":"une-vie-avec-une-maladie-hepatique-rare-des-defis-uniques-des-experiences-partagees","status":"publish","type":"post","link":"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/une-vie-avec-une-maladie-hepatique-rare-des-defis-uniques-des-experiences-partagees\/","title":{"rendered":"Une vie avec une maladie h\u00e9patique rare : des d\u00e9fis uniques, des exp\u00e9riences partag\u00e9es\u00a0"},"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=\"Ipsen Global  US Website Unique Challenges_ Shared Experience_Updated APPROVED\" src=\"https:\/\/player.vimeo.com\/video\/1082079074?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>\u00a0<strong>Le professeur David Jones et la professeure Val\u00e9rie McLin ont \u00e9t\u00e9 r\u00e9mun\u00e9r\u00e9s par Ipsen pour leur participation.<\/strong><\/p>\n\n\n\n<p>Les maladies cholestatiques rares du foie sont des pathologies qui peuvent toucher \u00e0 la fois les enfants et les adultes. Trois d\u2019entre elles \u2014 la cholangite biliaire primitive (CBP), la cholestase intrah\u00e9patique familiale progressive (CIFP) et le syndrome d\u2019Alagille (ALGS) \u2014 pr\u00e9sentent des similitudes, mais sont uniques par leurs causes, leurs manifestations et les d\u00e9fis qu\u2019elles posent aux patients et \u00e0 leurs familles\u00b9 \u00b2. Il est essentiel de comprendre ces maladies pour am\u00e9liorer le diagnostic, le traitement et la prise en charge globale\u00b3.<\/p>\n\n\n\n<p>La CBP est une <strong>maladie h\u00e9patique<\/strong> cholestatique <strong>rare <\/strong>et auto-immune dont la pr\u00e9valence augmente dans le monde entier. Chez les personnes atteintes de CBP, l\u2019organisme attaque et d\u00e9truit progressivement les petites voies biliaires du foie\u00b3. En l\u2019absence de traitement, l\u2019accumulation de bile et de toxines (cholestase) peut entra\u00eener des <strong>l\u00e9sions h\u00e9patiques<\/strong> (cirrhose) et \u00e9voluer vers une <strong>insuffisance h\u00e9patique<\/strong>\u2074 \u2075 \u2076.<\/p>\n\n\n\n<p>L\u2019accumulation de bile peut causer des l\u00e9sions au foie, ainsi que des sympt\u00f4mes tels qu\u2019une fatigue importante et de fortes d\u00e9mangeaisons. La CBP est souvent sous-diagnostiqu\u00e9e en raison de la subtilit\u00e9 de ses sympt\u00f4mes, ce qui rend la reconnaissance et l\u2019intervention pr\u00e9coces essentielles \u00e0 sa prise en charge\u2077.<\/p>\n\n\n\n<p>La CIFP, quant \u00e0 elle, regroupe un ensemble de maladies g\u00e9n\u00e9tiques rares dans lesquelles le foie a du mal \u00e0 lib\u00e9rer les acides biliaires n\u00e9cessaires \u00e0 la digestion des graisses et des huiles. Cette accumulation de bile peut gravement endommager le foie et mener \u00e0 une insuffisance h\u00e9patique\u2078. Bien que la CIFP puisse se manifester plus tard dans la vie, elle appara\u00eet g\u00e9n\u00e9ralement de fa\u00e7on plus agressive chez les nourrissons et les jeunes enfants\u2079 \u00b9\u2070.<\/p>\n\n\n\n<p>L\u2019ALGS est une maladie h\u00e9r\u00e9ditaire pouvant affecter le foie, le c\u0153ur, le cerveau, les vaisseaux sanguins et les os\u00b9\u00b9 \u00b9\u00b2 \u00b9\u00b3. Les enfants atteints ont souvent besoin d\u2019un soutien nutritionnel et de consultations m\u00e9dicales fr\u00e9quentes, ce qui a un impact sur leur scolarit\u00e9 et leur d\u00e9veloppement social\u00b9\u2074.<\/p>\n\n\n\n<p>Malgr\u00e9 leurs diff\u00e9rences, ces maladies partagent des caract\u00e9ristiques importantes. Un sympt\u00f4me cl\u00e9 chez tous les patients est le prurit (d\u00e9mangeaisons), qui peut \u00eatre accablant, en particulier chez les enfants\u00b9\u2075 \u00b9\u2076 \u00b9\u2077. Pour les personnes vivant avec ces maladies, les d\u00e9mangeaisons d\u00e9passent largement une simple g\u00eane : elles peuvent \u00eatre omnipr\u00e9sentes, perturber la vie quotidienne et causer une d\u00e9tresse significative. De plus, la fatigue est un autre sympt\u00f4me lourd de cons\u00e9quences, notamment pour les personnes souffrant d\u2019un \u00e9puisement profond affectant leur concentration et leurs interactions sociales.<\/p>\n\n\n\n<p>Ipsen s\u2019engage \u00e0 sensibiliser davantage aux maladies cholestatiques rares du foie et \u00e0 offrir des options th\u00e9rapeutiques aux personnes concern\u00e9es et \u00e0 leurs familles. Les avanc\u00e9es de la recherche m\u00e9dicale permettent d\u2019enrichir les possibilit\u00e9s de traitement et la gestion des sympt\u00f4mes\u00b9\u2078. Toutefois, la notori\u00e9t\u00e9 de ces pathologies reste faible dans les communaut\u00e9s de patients comme chez les professionnels de sant\u00e9 (PS), \u00e0 l\u2019\u00e9chelle mondiale. Il est essentiel de favoriser le dialogue autour des sympt\u00f4mes pour aider les personnes concern\u00e9es \u00e0 mieux les comprendre, les g\u00e9rer et obtenir un diagnostic dans les meilleurs d\u00e9lais. Une approche collaborative, centr\u00e9e sur le patient, est essentielle pour la prise en charge de ces maladies complexes.<\/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 role=\"heading\" aria-level=\"2\" 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><em>Moira B. Hilscher, Patrick S. Kamath, John E. Eaton, Cholestatic Liver Diseases: A Primer for Generalists and Subspecialists, Mayo Clinic Proceedings, Volume 95, Issue 10, 2020, Pages 2263-2279.<\/em><\/li>\n<li><em>Verkade, Henkjan J. et al. EASL Clinical Practice Guidelines on genetic cholestatic liver diseases, Journal of Hepatology, Volume 81, Issue 2, 303 &#8211; 325 <\/em><\/li>\n<li><em>Nguyen KD, Sundaram V, Ayoub WS. Atypical causes of cholestasis. World J Gastroenterol. 2014 Jul 28;20(28):9418-26. doi: 10.3748\/wjg.v20.i28.9418. PMID: 25071336; PMCID: PMC4110573. <\/em><\/li>\n<li><em>Younossi ZM, et al. 2019. Diagnosis and Management of Primary Biliary Cholangitis. Am J Gastroenterol. 114(1):48\u201363. <\/em><\/li>\n<li><em>European Association for the Study of the Liver. 2017. EASL Clinical Practice Guidelines: The diagnosis and management of patients with primary biliary cholangitis. J Hepatol. 67(1):145-172. <\/em><\/li>\n<li><em>Galoosian A, et al. 2020. Clinical updates in primary biliary cholangitis: trends, epidemiology, diagnostics, and new therapeutic approaches. J Clin Transl Hepatol. 8(1), pp. 49-60. <\/em><\/li>\n<li><em>Donato F, Pigozzi MG, Colarieti G, Festa M, Tabaglio E. Why are rare diseases underdiagnosed? A clinical management study on detection of primary biliary cholangitis in primary care. Ann Ig. 2024 Sep-Oct;36(5):614-618. doi: 10.7416\/ai.2024.2629. <\/em><\/li>\n<li><em>Baker A, et al. 2019. Systematic review of progressive familial intrahepatic cholestasis. Clin Resh Hepatol Gastroenterol. 43(1):20-36. <\/em><\/li>\n<li><em>Nayagam NS, et al. 2022. Clinical phenotype of adult<\/em><em>\u2010<\/em><em>onset liver disease in patients with variants in ABCB4, ABCB11, and ATP8B1. Hepatol Commun. 6(10):2654-2664. <\/em><\/li>\n<li><em>Srivastava A. Progressive familial intrahepatic cholestasis. J Clin Exp Hepatol. 2014 Mar;4(1):25-36. doi: 10.1016\/j.jceh.2013.10.005. <\/em><\/li>\n<li><em>National Organization for Rare Disorders. Rare Disease Database: Alagille Syndrome. Available at: <\/em><a href=\"https:\/\/rarediseases.org\/rarediseases\/alagille-syndrome.%20Accessed%20April%202024.%202\"><em>https:\/\/rarediseases.org\/rarediseases\/alagille-syndrome. Accessed April 2024. 2<\/em><\/a><\/li>\n<li><em>Tessitore M, Sorrentino E, Schiano Di Cola G, Colucci A, Vajro P, Mandato C. Malnutrition in Pediatric Chronic Cholestatic Disease: An Up-to-Date Overview. Nutrients. 2021 Aug 13;13(8):2785. doi: 10.3390\/nu13082785. <\/em><\/li>\n<li><em>D&#8217;Amico A, Perillo T, Cuocolo R, Ugga L, Di Dato F, Caranci F, Iorio R. Neuroradiological findings in Alagille syndrome. Br J Radiol. 2022 Jan 1;95(1129):20201241. doi: 10.1259\/bjr.20201241. <\/em><\/li>\n<li><em>Gilmour SM, Sorensen LG, Anand R, Yin W, Alonso EM; SPLIT Research Consortium. School outcomes in children registered in the studies for pediatric liver transplant (SPLIT) consortium. Liver Transpl. 2010 Sep;16(9):1041-8. doi: 10.1002\/lt.22120. <\/em><\/li>\n<li><em>Gunaydin M, Bozkurter Cil AT. Progressive familial intrahepatic cholestasis: diagnosis, management, and treatment. Hepat Med. 2018 Sep 10;10:95-104. doi: 10.2147\/HMER.S137209. <\/em><\/li>\n<li><em>Lurz, E., Laborde, N., Smith, R., Bork, C., Dorey, L., Howard, R., \u2026 Rosenthal, P. (2024). Caring for patients with Alagille syndrome: a multinational survey investigating the mental health and financial burden on caregivers. Future Rare Diseases, 4(1). <\/em><a href=\"https:\/\/doi.org\/10.1080\/23995270.2024.2394010\"><em>https:\/\/doi.org\/10.1080\/23995270.2024.2394010<\/em><\/a><\/li>\n<li><em>Mighiu C, O&#8217;Hara S, Ferri Grazzi E, Murray KF, Schattenberg JM, Ventura E, Karakaidos M, Taylor A, Brrang H, Dhawan A, Willemse J, Finnegan A. Impact of progressive familial intrahepatic cholestasis on caregivers: caregiver-reported outcomes from the multinational PICTURE study. Orphanet J Rare Dis. 2022 Feb 2;17(1):32. doi: 10.1186\/s13023-022-02177-0. <\/em><\/li>\n<li><em>Mysore KR, Cheng K, Suri LA, Fawaz R, Mavis AM, Kogan-Liberman D, Mohammad S, Taylor SA. Recent advances in the management of pediatric cholestatic liver diseases. J Pediatr Gastroenterol Nutr. 2025 Apr;80(4):549-558. doi: 10.1002\/jpn3.12462.<\/em><\/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>\u00a0Le professeur David Jones et la professeure Val\u00e9rie McLin ont \u00e9t\u00e9 r\u00e9mun\u00e9r\u00e9s par Ipsen pour leur participation. Les maladies cholestatiques<\/p>\n","protected":false},"author":11,"featured_media":77500,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[138],"tags":[],"class_list":["post-72828","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rare-diseases","entry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Une vie avec une maladie h\u00e9patique rare : des d\u00e9fis uniques, des exp\u00e9riences partag\u00e9es\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\" href=\"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/une-vie-avec-une-maladie-hepatique-rare-des-defis-uniques-des-experiences-partagees\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Une vie avec une maladie h\u00e9patique rare : des d\u00e9fis uniques, des exp\u00e9riences partag\u00e9es\u00a0 - Global\" \/>\n<meta property=\"og:description\" content=\"\u00a0Le professeur David Jones et la professeure Val\u00e9rie McLin ont \u00e9t\u00e9 r\u00e9mun\u00e9r\u00e9s par Ipsen pour leur participation. 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