{"id":9429,"date":"2024-10-01T07:14:00","date_gmt":"2024-10-01T07:14:00","guid":{"rendered":"https:\/\/www.rawoodfoundation.org\/?p=9429"},"modified":"2025-10-13T06:41:16","modified_gmt":"2025-10-13T06:41:16","slug":"mettre-en-lumiere-les-problemes-de-sante-des-survivants-du-craniopharyngiome","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/fr\/2024\/10\/01\/shedding-light-on-the-health-challenges-of-craniopharyngioma-survivors\/","title":{"rendered":"Faire la lumi\u00e8re sur les probl\u00e8mes de sant\u00e9 des survivants du craniopharyngiome"},"content":{"rendered":"<h2 class=\"wp-block-heading\">Nouvelles connaissances tir\u00e9es du registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires<\/h2>\n\n\n\n<p><a href=\"https:\/\/www.rawoodfoundation.org\/fr\/craniopharyngiome\/\">Cr\u00e2niopharyngiome<\/a> (CP) sont confront\u00e9s \u00e0 une s\u00e9rie de probl\u00e8mes de sant\u00e9 complexes qui persistent souvent longtemps apr\u00e8s le traitement. La Fondation Raymond A. Wood s'est engag\u00e9e \u00e0 am\u00e9liorer la vie de ces survivants en recueillant des donn\u00e9es essentielles par le biais de son registre des patients. Ces donn\u00e9es fournissent des informations pr\u00e9cieuses sur les probl\u00e8mes de sant\u00e9 des survivants du craniopharyngiome et constituent une base pour les recherches indispensables sur les traitements et les interventions. Voici quelques r\u00e9sultats cl\u00e9s de nos r\u00e9centes enqu\u00eates sur le registre, qui refl\u00e8tent les exp\u00e9riences de la communaut\u00e9 des survivants du CP.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Principaux probl\u00e8mes de sant\u00e9 actuels des survivants de la PC<\/h3>\n\n\n\n<p>Sur les 108 survivants du craniopharyngiome qui ont r\u00e9pondu \u00e0 l'enqu\u00eate sur les probl\u00e8mes de sant\u00e9, la majorit\u00e9 a d\u00e9clar\u00e9 \u00eatre confront\u00e9e \u00e0 des probl\u00e8mes permanents li\u00e9s \u00e0 un large \u00e9ventail d'affections :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Hypothyro\u00efdie :<\/strong> 86.1%<\/li>\n\n\n\n<li><strong><a href=\"https:\/\/www.rawoodfoundation.org\/fr\/croissance-remplacement-hormore\/\">D\u00e9ficit en hormone de croissance<\/a>:<\/strong> 78.7%<\/li>\n\n\n\n<li><strong><a href=\"https:\/\/www.rawoodfoundation.org\/fr\/la-prise-en-charge-du-diabete-insipide\/\">Diab\u00e8te insipide central<\/a>:<\/strong> 76.9%<\/li>\n\n\n\n<li><strong>Fatigue :<\/strong> 75.0%<\/li>\n\n\n\n<li><strong>Insuffisance surr\u00e9nale centrale :<\/strong> 75.0%<\/li>\n\n\n\n<li><strong>D\u00e9ficit en hormones sexuelles :<\/strong> 72.2%<\/li>\n\n\n\n<li><strong>L'ob\u00e9sit\u00e9 :<\/strong> 61.1%<\/li>\n\n\n\n<li><strong>R\u00e9gulation anormale de la temp\u00e9rature :<\/strong> 60.2%<\/li>\n\n\n\n<li><strong>Somnolence diurne excessive :<\/strong> 58.3%<\/li>\n\n\n\n<li><strong>Prise de poids :<\/strong> 56.5%<\/li>\n\n\n\n<li><strong>D\u00e9ficits cognitifs :<\/strong> 55.6%<\/li>\n<\/ul>\n\n\n\n<p>Ces donn\u00e9es donnent une image claire du fardeau que les survivants de la PC portent au quotidien. Les probl\u00e8mes les plus fr\u00e9quents, tels que l'hypothyro\u00efdie, le d\u00e9ficit en hormone de croissance et le diab\u00e8te insipide central, sont directement li\u00e9s \u00e0 l'impact de la tumeur sur l'axe hypothalamo-hypophysaire. Au-del\u00e0 des d\u00e9s\u00e9quilibres hormonaux, les survivants luttent contre la fatigue, les d\u00e9ficits cognitifs et les probl\u00e8mes de poids, ce qui rend souvent la vie quotidienne difficile.<\/p>\n\n\n\n<figure class=\"wp-block-image size-large\"><img decoding=\"async\" width=\"576\" height=\"1024\" src=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/Artboard-1-576x1024.png\" alt=\"Diagramme \u00e0 barres repr\u00e9sentant visuellement les probl\u00e8mes de sant\u00e9 des survivants de la PC.\" class=\"wp-image-9431\" srcset=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/Artboard-1-576x1024.png 576w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/Artboard-1-169x300.png 169w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/Artboard-1-768x1365.png 768w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/Artboard-1-864x1536.png 864w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/Artboard-1-7x12.png 7w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/Artboard-1.png 1080w\" sizes=\"(max-width: 576px) 100vw, 576px\" \/><\/figure>\n\n\n\n<p><\/p>\n\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h3 class=\"wp-block-heading\">L'ob\u00e9sit\u00e9 hypothalamique (HO) et son diagnostic<\/h3>\n\n\n\n<p>L'une des conditions les plus difficiles auxquelles sont confront\u00e9s les survivants d'un craniopharyngiome est la suivante <a href=\"https:\/\/www.rawoodfoundation.org\/fr\/obesite-hypothalamique\/\">ob\u00e9sit\u00e9 hypothalamique<\/a> (HO), un trouble m\u00e9tabolique souvent caus\u00e9 par des l\u00e9sions de l'hypothalamus au cours d'une intervention chirurgicale ou d'un traitement. Selon les donn\u00e9es de notre registre, 50% des 100 survivants de la PC interrog\u00e9s ont d\u00e9clar\u00e9 avoir re\u00e7u un diagnostic d'ob\u00e9sit\u00e9 hypothalamique. 36% ont d\u00e9clar\u00e9 ne pas avoir \u00e9t\u00e9 diagnostiqu\u00e9s, tandis que 11% n'\u00e9taient pas s\u00fbrs de leur diagnostic.<\/p>\n\n\n\n<p>Il est int\u00e9ressant de noter que seuls 35% des personnes ayant re\u00e7u un diagnostic d'HO ont d\u00e9clar\u00e9 avoir re\u00e7u un diagnostic \u00e9crit formel, tandis que la majorit\u00e9 - 79% - a d\u00e9clar\u00e9 avoir re\u00e7u un diagnostic verbal. Cette lacune dans la documentation formelle est importante, car elle peut affecter la qualit\u00e9 et la continuit\u00e9 des soins que re\u00e7oivent les survivants.<\/p>\n\n\n\n<figure class=\"wp-block-image size-full\"><img decoding=\"async\" width=\"1000\" height=\"1000\" src=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/HO.jpg\" alt=\"Diagramme \u00e0 barres montrant le diagnostic des patients atteints d&#039;HO.\" class=\"wp-image-9435\" srcset=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/HO.jpg 1000w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/HO-300x300.jpg 300w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/HO-150x150.jpg 150w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/HO-768x768.jpg 768w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/HO-12x12.jpg 12w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/HO-330x330.jpg 330w\" sizes=\"(max-width: 1000px) 100vw, 1000px\" \/><\/figure>\n\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h3 class=\"wp-block-heading\">Le fardeau m\u00e9dicamenteux des survivants de la PC<\/h3>\n\n\n\n<p>La gestion de ces probl\u00e8mes de sant\u00e9 exige souvent que les survivants du craniopharyngiome prennent plusieurs m\u00e9dicaments de fa\u00e7on continue. Selon notre enqu\u00eate aupr\u00e8s de 82 participants :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>94%<\/strong> prennent des substituts de la thyro\u00efde (T4)<\/li>\n\n\n\n<li><strong>85%<\/strong> sont sous corticost\u00e9ro\u00efdes<\/li>\n\n\n\n<li><strong>79%<\/strong> prendre des hormones antidiur\u00e9tiques de substitution<\/li>\n\n\n\n<li><strong>63%<\/strong> suivent un traitement de substitution \u00e0 l'hormone de croissance<\/li>\n\n\n\n<li><strong>60%<\/strong> prendre des suppl\u00e9ments vitaminiques<\/li>\n\n\n\n<li><strong>59%<\/strong> sont sous traitement hormonal substitutif<\/li>\n<\/ul>\n\n\n\n<p>En moyenne, les survivants g\u00e8rent <strong>sept m\u00e9dicaments par jour<\/strong>Certains d'entre eux prennent jusqu'\u00e0 <strong>15 m\u00e9dicaments<\/strong> pour g\u00e9rer leur maladie. Ce fardeau m\u00e9dicamenteux souligne la complexit\u00e9 de leurs besoins en mati\u00e8re de sant\u00e9 et l'importance d'une prise en charge globale et coordonn\u00e9e.<\/p>\n\n\n\n<figure class=\"wp-block-image size-large\"><img decoding=\"async\" width=\"688\" height=\"1024\" src=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/MED-BLOG-688x1024.jpg\" alt=\"Diagramme \u00e0 barres montrant l&#039;utilisation de m\u00e9dicaments parmi les survivants de la PC\" class=\"wp-image-9436\" srcset=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/MED-BLOG-688x1024.jpg 688w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/MED-BLOG-201x300.jpg 201w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/MED-BLOG-768x1144.jpg 768w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/MED-BLOG-8x12.jpg 8w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/09\/MED-BLOG.jpg 1000w\" sizes=\"(max-width: 688px) 100vw, 688px\" \/><\/figure>\n\n\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h3 class=\"wp-block-heading\">L'importance de ces donn\u00e9es<\/h3>\n\n\n\n<p>Les informations tir\u00e9es de notre registre des patients ne sont pas que des chiffres : elles repr\u00e9sentent les exp\u00e9riences v\u00e9cues par les survivants de notre communaut\u00e9. Par l'interm\u00e9diaire de <a href=\"https:\/\/www.rawoodfoundation.org\/fr\/\" target=\"_blank\" rel=\"noreferrer noopener\">Initiatives de soutien aux patients atteints de craniopharyngiome<\/a>Dans le cadre de ce projet, les survivants et les soignants peuvent acc\u00e9der \u00e0 des ressources essentielles, \u00e0 des connaissances partag\u00e9es et \u00e0 un r\u00e9seau de soutien qui les aide \u00e0 faire face \u00e0 ces probl\u00e8mes de sant\u00e9 complexes. En comprenant les probl\u00e8mes de sant\u00e9 les plus courants et le poids des traitements en cours, nous pouvons plaider en faveur de meilleurs soins, d'une recherche plus cibl\u00e9e et de protocoles de traitement am\u00e9lior\u00e9s qui r\u00e9pondent aux besoins uniques des survivants du craniopharyngiome.<\/p>\n\n\n\n<p>Nous avons besoin de votre aide pour continuer \u00e0 construire ces donn\u00e9es. L'histoire de chaque personne ajoute une pi\u00e8ce cruciale au puzzle. En participant au registre, vous aidez non seulement \u00e0 dresser un tableau plus clair de ce que vivent les survivants de la PC, mais vous contribuez \u00e9galement \u00e0 la recherche qui pourrait d\u00e9boucher sur de meilleurs traitements et de meilleurs r\u00e9sultats pour les patients atteints de la PC. <\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Comment vous pouvez aider<\/h3>\n\n\n\n<p>Si vous avez surv\u00e9cu \u00e0 un craniopharyngiome ou si vous \u00eates un soignant, nous vous invitons \u00e0 <a href=\"https:\/\/www.rawoodfoundation.org\/fr\/registre-des-tumeurs\/\">rejoignez notre registre de patients<\/a>. Vos exp\u00e9riences sont importantes et, en fournissant vos donn\u00e9es, vous contribuez \u00e0 fa\u00e7onner l'avenir des soins pour les survivants de la PC. Ensemble, nous pouvons faire la diff\u00e9rence.<\/p>\n\n\n\n<p>Poursuivons la conversation et veillons \u00e0 ce que chaque histoire soit racont\u00e9e.<\/p>","protected":false},"excerpt":{"rendered":"<p>Nouvelles perspectives du registre des patients atteints de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires Les survivants d'un craniopharyngiome (CP) sont ... <a title=\"Faire la lumi\u00e8re sur les probl\u00e8mes de sant\u00e9 des survivants du craniopharyngiome\" class=\"read-more\" href=\"https:\/\/www.rawoodfoundation.org\/fr\/2024\/10\/01\/shedding-light-on-the-health-challenges-of-craniopharyngioma-survivors\/\" aria-label=\"En savoir plus sur les probl\u00e8mes de sant\u00e9 des personnes ayant surv\u00e9cu \u00e0 un craniopharyngiome\">Lire plus<\/a><\/p>","protected":false},"author":4,"featured_media":9439,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[20],"tags":[],"class_list":["post-9429","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-latest-research","generate-columns","tablet-grid-50","mobile-grid-100","grid-parent","grid-33","no-featured-image-padding"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Shedding Light on the Health Challenges of Craniopharyngioma Survivors - Raymond A. Wood Foundation<\/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.rawoodfoundation.org\/fr\/2024\/10\/01\/mettre-en-lumiere-les-problemes-de-sante-des-survivants-du-craniopharyngiome\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Shedding Light on the Health Challenges of Craniopharyngioma Survivors - Raymond A. Wood Foundation\" \/>\n<meta property=\"og:description\" content=\"New Insights from the Hypothalamic-Pituitary Brain Tumor Patient Registry Craniopharyngioma (CP) survivors face a range ... Lire plus\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.rawoodfoundation.org\/fr\/2024\/10\/01\/mettre-en-lumiere-les-problemes-de-sante-des-survivants-du-craniopharyngiome\/\" \/>\n<meta property=\"og:site_name\" content=\"Raymond A. 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