{"id":9183,"date":"2024-04-24T15:47:40","date_gmt":"2024-04-24T15:47:40","guid":{"rendered":"https:\/\/www.rawoodfoundation.org\/?p=9183"},"modified":"2025-05-05T17:03:21","modified_gmt":"2025-05-05T17:03:21","slug":"naviguer-dans-lombre-mon-voyage-avec-le-craniopharyngiome-et-trouver-la-gratitude-en-chemin","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/fr\/2024\/04\/24\/navigating-the-shadows-my-journey-with-craniopharyngioma-and-finding-gratitude-along-the-way\/","title":{"rendered":"Naviguer dans l'ombre : Mon voyage avec le craniopharyngiome et la gratitude que j'ai trouv\u00e9e en chemin"},"content":{"rendered":"<p>Mon histoire est tr\u00e8s am\u00e8re. J'ai commenc\u00e9 \u00e0 pr\u00e9senter pratiquement tous les sympt\u00f4mes du craniopharyngiome, mais je n'ai \u00e9t\u00e9 diagnostiqu\u00e9 et trait\u00e9 qu'un an plus tard. La plupart des patients atteints de craniopharyngiome \u00e9taient des enfants ou des adultes dans la cinquantaine ou la soixantaine. J'avais une vingtaine d'ann\u00e9es et il \u00e9tait donc impossible que j'aie une tumeur de l'hypophyse.<\/p>\n\n\n\n<p>J'\u00e9tais \u00e9tudiante dipl\u00f4m\u00e9e \u00e0 l'\u00e9poque, mais je me souviens d'une nuit o\u00f9 je rendais visite \u00e0 mes parents. Vers 3 heures du matin, je suis descendue chercher de l'eau. J'ai fini par ouvrir une grande bo\u00eete de jus d'ananas et j'ai tout bu. Mon p\u00e8re \u00e9tait descendu et me regardait. D'une voix angoiss\u00e9e, il m'a demand\u00e9 : \"Qu'est-ce qui se passe ?\" Mais je ne savais pas.<\/p>\n\n\n\n<p>Un m\u00e9decin m'a fait passer des tests terribles, comme une biopsie du foie et l'insertion d'une bulle d'air dans ma colonne vert\u00e9brale. Il m'a \u00e9galement fait repasser un test de privation d'eau, ce qui est tr\u00e8s difficile si vous souffrez de diab\u00e8te insipide. Je n'en pouvais plus de rester au lit \u00e0 fantasmer sur l'eau, alors je suis all\u00e9e me promener. Lorsque les r\u00e9sultats ont \u00e9t\u00e9 limites, il m'a accus\u00e9e d'avoir trich\u00e9. Finalement, il a diagnostiqu\u00e9 une maladie tropicale et m'a prescrit un corticost\u00e9ro\u00efde appel\u00e9 Prednisone. J'ai pris plus de 20 kilos sous ce traitement, la plupart au niveau de l'estomac. Cela a ruin\u00e9 mes chances de sortir avec quelqu'un.<\/p>\n\n\n\n<p>\u00c0 un moment donn\u00e9, j'ai \u00e9t\u00e9 mise sous DDAVP (ac\u00e9tate de desmopressine) et la soif intense et les pipis incessants ont cess\u00e9. C'\u00e9tait un petit miracle. Plus tard, j'ai subi une intervention chirurgicale et une radioth\u00e9rapie. On m'a dit que j'avais eu beaucoup de chance, parce que l'id\u00e9e de suivre une op\u00e9ration chirurgicale \u00e9tait nouvelle. C'est peut-\u00eatre la raison pour laquelle j'ai v\u00e9cu si longtemps.<\/p>\n\n\n\n<figure class=\"gb-block-image gb-block-image-5179a2f6\"><img decoding=\"async\" width=\"340\" height=\"604\" class=\"gb-image gb-image-5179a2f6\" src=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/04\/Screenshot-2024-04-24-at-11.34.55-AM.png\" alt=\"Femme debout pour une photo\" title=\"Screenshot-2024-04-24-at-11.34.55-AM\" srcset=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/04\/Screenshot-2024-04-24-at-11.34.55-AM.png 340w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/04\/Screenshot-2024-04-24-at-11.34.55-AM-169x300.png 169w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2024\/04\/Screenshot-2024-04-24-at-11.34.55-AM-7x12.png 7w\" sizes=\"(max-width: 340px) 100vw, 340px\" \/><\/figure>\n\n\n\n<p><\/p>\n\n\n\n<p>Cela fait presque 40 ans que je suis tomb\u00e9e malade pour la premi\u00e8re fois. Pendant longtemps, j'ai \u00e9t\u00e9 malheureuse de mon ob\u00e9sit\u00e9 caus\u00e9e par le Dr Horrible, malheureuse de me sentir si isol\u00e9e et de ne conna\u00eetre personne d'autre qui avait ma tumeur c\u00e9r\u00e9brale (ou n'importe quelle tumeur c\u00e9r\u00e9brale), et aussi seule, tr\u00e8s insatisfaite des m\u00e9decins qui n'ont pas diagnostiqu\u00e9 ma tumeur et ne m'ont pas mis sous traitement hormonal substitutif. Certains m\u00e9decins continuent de refuser de voir les probl\u00e8mes.<\/p>\n\n\n\n<p>Mais j'ai fini par r\u00e9aliser que j'avais beaucoup de raisons d'\u00eatre reconnaissante. Je suis reconnaissante d'avoir fait la connaissance de mes ni\u00e8ces et de mes neveux, et de les avoir g\u00e2t\u00e9s. Je suis reconnaissante d'\u00eatre devenue si proche de mon fr\u00e8re et de mes cousins. Je suis heureuse de pouvoir me permettre de vivre seule. J'attends avec impatience le d\u00e9veloppement de la <a href=\"https:\/\/www.rawoodfoundation.org\/fr\/2023\/09\/08\/innover-dans-la-prise-en-charge-du-diabete-insipide-une-percee-dans-le-dosage-du-sodium-sanguin\/\">compteur de sodium,<\/a> afin de mieux mesurer mes besoins en ac\u00e9tate de desmopressine. Je suis \u00e9galement reconnaissante d'avoir trouv\u00e9 la Fondation Raymond A Wood et j'esp\u00e8re participer \u00e0 la prochaine conf\u00e9rence.&nbsp;<\/p>\n\n\n\n<p>Je n'ai pas encore r\u00e9ussi \u00e0 pardonner au m\u00e9decin qui m'a fait tant souffrir, mais je vais de l'avant. Lentement. J'ai h\u00e2te de rencontrer d'autres personnes atteintes de tumeurs hypophysaires lors de la prochaine conf\u00e9rence de la RAWF, ainsi que le personnel et les conf\u00e9renciers. Ma m\u00e9moire commence \u00e0 s'estomper avec l'\u00e2ge, mais je suis toujours intelligente et joyeuse (sauf avec certains m\u00e9decins). <\/p>\n\n\n\n<p>Si vous souhaitez partager votre histoire, veuillez <a href=\"https:\/\/www.rawoodfoundation.org\/fr\/partagez-votre-histoire-2\/\">compl\u00e9ter ce formulaire<\/a> ou envoyez-nous un courriel \u00e0 l'adresse outreach@rawoodfoundation.org.  <\/p>\n\n\n\n<p><\/p>","protected":false},"excerpt":{"rendered":"<p>Mon histoire est tr\u00e8s am\u00e8re. J'ai commenc\u00e9 \u00e0 pr\u00e9senter pratiquement tous les sympt\u00f4mes ... <a title=\"Naviguer dans l&#039;ombre : Mon voyage avec le craniopharyngiome et la gratitude que j&#039;ai trouv\u00e9e en chemin\" class=\"read-more\" href=\"https:\/\/www.rawoodfoundation.org\/fr\/2024\/04\/24\/navigating-the-shadows-my-journey-with-craniopharyngioma-and-finding-gratitude-along-the-way\/\" aria-label=\"Lire la suite de Naviguer dans l&#039;ombre : Mon parcours avec le craniopharyngiome et la gratitude que j&#039;ai trouv\u00e9e en chemin\">Lire plus<\/a><\/p>","protected":false},"author":4,"featured_media":9252,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[35,43],"tags":[34,51,50],"class_list":["post-9183","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-craniopharyngioma","category-patient-stories","tag-brain-tumor","tag-share-your-story","tag-survivor","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>Navigating the Shadows: My Journey with Craniopharyngioma and Finding Gratitude Along the Way - Raymond A. 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