{"id":156,"date":"2023-04-06T16:51:00","date_gmt":"2023-04-06T16:51:00","guid":{"rendered":"https:\/\/live-rawf.pantheonsite.io\/2023\/04\/06\/2023-4-4-latest-recipient-jessica-a-germinoma-survivor-faces-sodium-complications-later-in-life\/"},"modified":"2023-08-09T17:23:11","modified_gmt":"2023-08-09T17:23:11","slug":"2023-4-4-derniere-beneficiaire-jessica-une-survivante-dun-germinome-doit-faire-face-a-des-complications-liees-au-sodium-plus-tard-dans-sa-vie","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/fr\/2023\/04\/06\/2023-4-4-latest-recipient-jessica-a-germinoma-survivor-faces-sodium-complications-later-in-life\/","title":{"rendered":"Jessica, survivante d'un germinome, est confront\u00e9e \u00e0 des complications li\u00e9es au sodium plus tard dans sa vie"},"content":{"rendered":"Les survivants de tumeurs hypothalamo-hypophysaires paient un lourd tribut \u00e0 la survie. Au cours de leur vie, nombre d'entre eux verront appara\u00eetre des pathologies qui renvoient \u00e0 la tumeur, ou souffriront d'une progression des sympt\u00f4mes. Prenons l'exemple de Jessica, aujourd'hui \u00e2g\u00e9e de 38 ans, \u00e0 qui l'on a diagnostiqu\u00e9 un germinome c\u00e9r\u00e9bral \u00e0 l'\u00e2ge de 8 ans et qui a \u00e9t\u00e9 trait\u00e9e par ablation chirurgicale et radioth\u00e9rapie. \u00c0 la suite du traitement, elle a d\u00e9velopp\u00e9 un hypopituitarisme, une perte compl\u00e8te de la fonction hypophysaire et une d\u00e9ficience en arginine vasopressine centrale, une condition anciennement appel\u00e9e diab\u00e8te insipide. <\/span><\/p>\n\n\n\n\n<div class=\"sqs-html-content\">\n<p class=\"\" style=\"white-space: pre-wrap;\">L'ann\u00e9e derni\u00e8re, Jessica a subi deux accidents vasculaires c\u00e9r\u00e9braux qui ont aggrav\u00e9 les l\u00e9sions d'une r\u00e9gion du cerveau d\u00e9j\u00e0 compromise. Elle a connu de multiples complications avec des taux de sodium sanguin inf\u00e9rieurs \u00e0 120 ou sup\u00e9rieurs \u00e0 160 (l'intervalle normal est de 135-145), ce qui a entra\u00een\u00e9 de nombreuses et longues hospitalisations selon son endocrinologue. Un taux de sodium hors norme peut provoquer des crises, un coma et peut \u00eatre fatal s'il n'est pas trait\u00e9 par des m\u00e9dicaments et une gestion des fluides. Le probl\u00e8me est qu'il n'existe aucun moyen approuv\u00e9 par la FDA pour tester le taux de sodium en dehors d'un laboratoire ou d'un h\u00f4pital. La seule option pour un test \u00e0 domicile est d'utiliser un analyseur de sang portable de qualit\u00e9 hospitali\u00e8re qui peut effectuer un panel m\u00e9tabolique de base comprenant un test de sodium et d'\u00e9lectrolytes.&nbsp;<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">Jessica vit \u00e0 Summerville, en Caroline du Sud, avec sa m\u00e8re, Betty. Elle aime les puzzles, les jeux sur son t\u00e9l\u00e9phone et les voyages, en particulier pour voir ses deux neveux. Sa plus grande difficult\u00e9, outre les r\u00e9centes hospitalisations et les probl\u00e8mes de sodium, est sa m\u00e9moire \u00e0 court terme qui, selon Betty, s'aggrave d'ann\u00e9e en ann\u00e9e.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">L'endocrinologue de Jessica et sa m\u00e8re ont ardemment plaid\u00e9 pour l'obtention d'un analyseur de sang portatif afin de mieux g\u00e9rer les probl\u00e8mes de sodium. Gr\u00e2ce au soutien de nos donateurs, la Fondation Raymond A. Wood a fourni un appareil \u00e0 la famille cette semaine.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">\"Jess vit toujours avec moi et l'ann\u00e9e \u00e9coul\u00e9e a \u00e9t\u00e9 difficile pour nous deux\", a d\u00e9clar\u00e9 Betty.  \"Nous ne saurions trop vous remercier de nous avoir donn\u00e9 l'occasion d'utiliser cet \u00e9quipement ! J'esp\u00e8re que cela l'aidera \u00e0 ne pas aller \u00e0 l'h\u00f4pital !<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">Ces analyseurs de sang portatifs sont utilis\u00e9s de mani\u00e8re non officielle pour g\u00e9rer cette maladie, de sorte que les co\u00fbts ne sont g\u00e9n\u00e9ralement pas couverts par l'assurance. Cependant, la possibilit\u00e9 de tester le sodium \u00e0 domicile s'est av\u00e9r\u00e9e efficace pour r\u00e9duire les longs s\u00e9jours \u00e0 l'h\u00f4pital. Un test rapide permet au soignant et au clinicien d'effectuer des changements de liquides et de m\u00e9dicaments qui peuvent sauver des vies. RAWF, en collaboration avec ses partenaires du Children's Hospital of Philadelphia et de Giner, Inc. s'efforce de faire de la mesure du sodium \u00e0 domicile une r\u00e9alit\u00e9 en soutenant le d\u00e9veloppement d'un appareil de mesure du sodium. En savoir plus sur ce projet.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">L'histoire de Jessica est un exemple des complications \u00e0 long terme auxquelles sont confront\u00e9s de nombreux survivants de ces tumeurs. \u00c0 la Fondation Raymond A. Wood, nous nous effor\u00e7ons de soutenir les survivants et leurs familles \u00e0 chaque \u00e9tape, du diagnostic \u00e0 la survie. Merci de soutenir notre mission afin de nous permettre de fournir ces appareils aux familles pour qu'elles puissent mieux g\u00e9rer les soins de leurs proches.<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"<p>Les survivants des tumeurs hypothalamo-hypophysaires paient un lourd tribut \u00e0 la survie. Nombreux sont ceux qui, tout au long de leur vie, ... <a title=\"Jessica, survivante d&#039;un germinome, est confront\u00e9e \u00e0 des complications li\u00e9es au sodium plus tard dans sa vie\" class=\"read-more\" href=\"https:\/\/www.rawoodfoundation.org\/fr\/2023\/04\/06\/2023-4-4-latest-recipient-jessica-a-germinoma-survivor-faces-sodium-complications-later-in-life\/\" aria-label=\"En savoir plus sur Jessica, survivante d&#039;un germinome, confront\u00e9e \u00e0 des complications li\u00e9es au sodium plus tard dans sa vie\">Lire plus<\/a><\/p>","protected":false},"author":6,"featured_media":157,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[21,1],"tags":[],"class_list":["post-156","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blood-analyzer-recipient","category-uncategorized","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>Jessica, a Germinoma Survivor, Faces Sodium Complications Later in Life - Raymond A. Wood Foundation<\/title>\n<meta name=\"description\" content=\"Jessica, a craniopharyngioma survivor, receives blood analyzer from Raymond A. Wood Foundation to manage arginine vasopressin deficiency.\" \/>\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\/2023\/04\/06\/2023-4-4-derniere-beneficiaire-jessica-une-survivante-dun-germinome-doit-faire-face-a-des-complications-liees-au-sodium-plus-tard-dans-sa-vie\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Jessica, a Germinoma Survivor, Faces Sodium Complications Later in Life - Raymond A. Wood Foundation\" \/>\n<meta property=\"og:description\" content=\"Jessica, a craniopharyngioma survivor, receives blood analyzer from Raymond A. 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