{"id":7696,"date":"2022-10-25T17:54:00","date_gmt":"2022-10-25T17:54:00","guid":{"rendered":"https:\/\/live-rawf.pantheonsite.io\/?p=7696"},"modified":"2023-07-28T18:00:18","modified_gmt":"2023-07-28T18:00:18","slug":"histoire-dun-patient-trinity","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/fr\/2022\/10\/25\/patient-story-trinity\/","title":{"rendered":"T\u00e9moignage d'un patient : Trinity"},"content":{"rendered":"<p>Trinity est n\u00e9e le 23 octobre 2008, une belle petite fille de 8 livres et 6 onces en bonne sant\u00e9. La grossesse s'est d\u00e9roul\u00e9e \u00e0 terme, sans aucune complication. Trinity \u00e9tait un b\u00e9b\u00e9 qui apprenait vite et qui atteignait tr\u00e8s t\u00f4t les \u00e9tapes importantes de sa vie. Elle \u00e9tait passionn\u00e9e par le chant, la danse et l'apprentissage de nouvelles choses. Toujours perfectionniste, elle aimait aider \u00e0 faire le m\u00e9nage et \u00e0 garder sa chambre dans un certain \u00e9tat. \u00c0 l'\u00e9cole, elle excellait, faisant preuve de d\u00e9termination dans tout ce qu'elle entreprenait.<\/p>\n\n\n\n<p>En deuxi\u00e8me ann\u00e9e, Trinity a commenc\u00e9 \u00e0 \u00e9prouver des difficult\u00e9s \u00e0 lire et \u00e0 voir de loin. Une visite chez l'ophtalmologiste a r\u00e9v\u00e9l\u00e9 un astigmatisme dans les deux yeux et des lunettes lui ont \u00e9t\u00e9 prescrites, ce qui a consid\u00e9rablement am\u00e9lior\u00e9 sa vision. Lors de sa visite m\u00e9dicale, on a remarqu\u00e9 qu'elle n'avait pas beaucoup grandi, mais le m\u00e9decin a assur\u00e9 qu'il s'agissait simplement d'une croissance lente.<\/p>\n\n\n\n<p>\u00c0 l'\u00e2ge de neuf ans, Trinity a \u00e9t\u00e9 confront\u00e9e \u00e0 de graves maux de t\u00eate, \u00e0 une vision floue et \u00e0 l'absence de croissance de sa taille. Apr\u00e8s huit jours de maux de t\u00eate, elle s'est sentie \u00e9tourdie et s'est effondr\u00e9e. Inquiets, ses parents l'ont emmen\u00e9e aux urgences, o\u00f9 une IRM a r\u00e9v\u00e9l\u00e9 une tumeur c\u00e9r\u00e9brale. La nouvelle \u00e9tait d\u00e9vastatrice et ils ont \u00e9t\u00e9 imm\u00e9diatement admis \u00e0 l'h\u00f4pital pour enfants Vanderbilt.<\/p>\n\n\n\n<p>La tumeur, connue sous le nom de craniopharyngiome, avait envahi la tige pituitaire, l'hypophyse et \u00e9tait attach\u00e9e \u00e0 l'hypothalamus, provoquant un gonflement du cerveau en raison d'un mauvais drainage du liquide c\u00e9phalo-rachidien. Trinity a subi une intervention chirurgicale pour retirer la tumeur et l'hypophyse, suivie d'un traitement hormonal de substitution. Malgr\u00e9 son r\u00e9tablissement, elle a d\u00fb faire face \u00e0 des probl\u00e8mes de m\u00e9moire \u00e0 court terme.<\/p>\n\n\n\n<p>La vie de Trinity a chang\u00e9 radicalement depuis lors, avec des m\u00e9dicaments quotidiens, des sorties sensibles \u00e0 la temp\u00e9rature et la n\u00e9cessit\u00e9 de faire face aux effets du craniopharyngiome. Malgr\u00e9 ces d\u00e9fis, elle est rest\u00e9e aimante, fid\u00e8le et d\u00e9termin\u00e9e. Sa s\u0153ur, Serenity, a \u00e9galement jou\u00e9 un r\u00f4le important en la soutenant.<\/p>\n\n\n\n<p>Au fur et \u00e0 mesure qu'elle grandit, Trinity est confront\u00e9e \u00e0 d'autres difficult\u00e9s, notamment \u00e0 des brimades en raison de son poids, de sa m\u00e9moire et de son incapacit\u00e9 \u00e0 transpirer. Le syst\u00e8me d'enseignement public ayant du mal \u00e0 r\u00e9pondre \u00e0 ses besoins, ses parents ont d\u00e9cid\u00e9 de lui faire l'\u00e9cole \u00e0 la maison, ce qui lui permet d'apprendre \u00e0 son propre rythme.<\/p>\n\n\n\n<p>Les effets de la tumeur se sont \u00e9tendus \u00e0 d'autres zones, telles que le foie, entra\u00eenant une maladie h\u00e9patique graisseuse non alcoolique (NAFLD) due \u00e0 l'ob\u00e9sit\u00e9 hypothalamique. Des m\u00e9dicaments pour la perte de poids sont envisag\u00e9s pour rem\u00e9dier \u00e0 ce probl\u00e8me.<\/p>\n\n\n\n<p>Tout au long de ce parcours, la force et la r\u00e9sistance de Trinity ont \u00e9t\u00e9 une source d'inspiration. Perfectionniste comme sa m\u00e8re, elle excelle \u00e0 aider \u00e0 la maison, \u00e0 cuisiner, \u00e0 dessiner et \u00e0 s'occuper de sa famille. La route a \u00e9t\u00e9 \u00e9motionnellement, financi\u00e8rement et physiquement difficile pour la famille, mais ils ont r\u00e9ussi \u00e0 s'en sortir.<\/p>\n\n\n\n<p>Calendrier :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>2015 (7 ans) : Diagnostic d'astigmatisme dans les deux yeux, pire dans le gauche. Lunettes prescrites.<\/li>\n\n\n\n<li>2016 (8 ans) : La visite de contr\u00f4le du p\u00e9diatre a r\u00e9v\u00e9l\u00e9 une absence de croissance de la taille depuis plus d'un an. Il a d\u00e9termin\u00e9 que sa croissance \u00e9tait lente.<\/li>\n\n\n\n<li>15 mars 2018 (9 ans) : D\u00e9but des maux de t\u00eate s\u00e9v\u00e8res, attribu\u00e9s initialement aux changements m\u00e9t\u00e9orologiques.<\/li>\n\n\n\n<li>23 mars 2018 (jour 8 des maux de t\u00eate) : S'est effondr\u00e9 \u00e0 Wal-Mart. Admis chez le p\u00e9diatre, qui a demand\u00e9 une IRM.<\/li>\n\n\n\n<li>30 mars 2018 : D\u00e9couverte d'une tumeur au cerveau (craniopharyngiome). Admis \u00e0 l'h\u00f4pital pour enfants Vanderbilt pour y \u00eatre trait\u00e9.<\/li>\n\n\n\n<li>Le 4 avril 2018 : Intervention chirurgicale pour retirer la tumeur et l'hypophyse. D\u00e9but de la prise de m\u00e9dicaments de substitution hormonale.<\/li>\n\n\n\n<li>10 avril 2018 : Transfert de l'USIP vers une chambre de patient.<\/li>\n\n\n\n<li>11 avril 2018 : Sortie de l'h\u00f4pital et retour \u00e0 la maison.<\/li>\n\n\n\n<li>2019 : Les amygdales et les ad\u00e9no\u00efdes se sont d\u00e9velopp\u00e9es rapidement sous l'effet de l'hormone de croissance et ont \u00e9t\u00e9 retir\u00e9es.<\/li>\n\n\n\n<li>2019-2022 : IRM annuelle et analyses tous les trois mois pour surveiller la r\u00e9currence de la tumeur et les niveaux d'hormones. Ajustement des m\u00e9dicaments si n\u00e9cessaire.<\/li>\n\n\n\n<li>Novembre 2022 (14 ans) : Diagnostiqu\u00e9 avec une scoliose s\u00e9v\u00e8re avec une courbure de 75 degr\u00e9s de la colonne vert\u00e9brale.<\/li>\n\n\n\n<li>Le 7 mars 2023 : Chirurgie pour redresser sa colonne vert\u00e9brale \u00e0 l'aide de tiges, de vis et d'une greffe osseuse.<\/li>\n\n\n\n<li>10 mars 2023 : Sortie de l'h\u00f4pital avec une pompe \u00e0 vide.<\/li>\n\n\n\n<li>17 mars 2023 : Le pansement sous vide est retir\u00e9 et un pansement sec est appliqu\u00e9.<\/li>\n<\/ul>\n\n\n<div class=\"wp-block-image\">\n<figure class=\"aligncenter size-full\"><img decoding=\"async\" width=\"320\" height=\"240\" src=\"https:\/\/live-rawf.pantheonsite.io\/wp-content\/uploads\/2023\/07\/FB_IMG_1679106086969.jpg\" alt=\"Trinit\u00e9\" class=\"wp-image-7698\" srcset=\"https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2023\/07\/FB_IMG_1679106086969.jpg 320w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2023\/07\/FB_IMG_1679106086969-300x225.jpg 300w, https:\/\/www.rawoodfoundation.org\/wp-content\/uploads\/2023\/07\/FB_IMG_1679106086969-16x12.jpg 16w\" sizes=\"(max-width: 320px) 100vw, 320px\" \/><\/figure><\/div>","protected":false},"excerpt":{"rendered":"<p>Trinity est n\u00e9e le 23 octobre 2008, une belle petite fille en bonne sant\u00e9 de 8 livres et 6 onces. Il ... <a title=\"T\u00e9moignage d&#039;un patient : Trinity\" class=\"read-more\" href=\"https:\/\/www.rawoodfoundation.org\/fr\/2022\/10\/25\/patient-story-trinity\/\" aria-label=\"En savoir plus sur l&#039;histoire d&#039;un patient : Trinity\">Lire plus<\/a><\/p>","protected":false},"author":6,"featured_media":7697,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[19,43],"tags":[],"class_list":["post-7696","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-caregiver-stories","category-patient-stories","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>Patient Story: Trinity - Raymond A. 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