{"id":115,"date":"2021-09-02T20:41:03","date_gmt":"2021-09-02T20:41:03","guid":{"rendered":"https:\/\/live-rawf.pantheonsite.io\/2021\/09\/02\/2021-9-2-ten-year-cranioversary-parent-reflection\/"},"modified":"2023-08-01T19:20:54","modified_gmt":"2023-08-01T19:20:54","slug":"2021-9-2-dixieme-annee-cranioversaire-reflexion-des-parents","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/fr\/2021\/09\/02\/2021-9-2-ten-year-cranioversary-parent-reflection\/","title":{"rendered":"R\u00e9flexion sur le dixi\u00e8me anniversaire de la naissance d'un parent"},"content":{"rendered":"
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Contribution d'Eugenie Hsu, m\u00e8re d'Alex, survivante d'un craniopharyngiome et membre du conseil d'administration de la Fondation Raymond A. Wood<\/em><\/p>\n<\/div>\n<\/p>\n<\/p>\n<\/p>\n

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Alex Riley, 10 jours apr\u00e8s une craniotomie pour retirer un craniopharyngiome<\/p>\n<\/div>\n<\/figcaption><\/figure>\n<\/p><\/div>\n

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Le 23 ao\u00fbt 2011, une tumeur c\u00e9r\u00e9brale appel\u00e9e craniopharyngiome a \u00e9t\u00e9 diagnostiqu\u00e9e chez Alex, notre fils \u00e2g\u00e9 de 8 ans \u00e0 l'\u00e9poque. On nous a dit que m\u00eame s'il survivrait probablement \u00e0 l'op\u00e9ration, il serait atteint de maladies chroniques, notamment \"diab\u00e8te insipide, panhypopituitarisme, ob\u00e9sit\u00e9 hypothalamique...\". Je n'ai pu absorber aucune explication sur la terminologie m\u00e9dicale, car j'\u00e9tais sous le choc d'apprendre que mon petit gar\u00e7on a eu une tumeur au cerveau<\/em>. Le neurochirurgien a expliqu\u00e9 la localisation du craniopharyngiome \u00e0 l'aide d'un mod\u00e8le de t\u00eate humaine et j'ai regard\u00e9 avec horreur comment il a enlev\u00e9 la partie externe du cr\u00e2ne, puis les parties, morceau par morceau, jusqu'\u00e0 ce qu'il atteigne le c\u0153ur m\u00eame du cerveau. Plus sa main s'enfon\u00e7ait dans la t\u00eate du mod\u00e8le pour en retirer des parties, plus j'\u00e9tais inquiet car je me rendais compte que cette tumeur \u00e9tait log\u00e9e dans une zone tr\u00e8s pr\u00e9caire du cerveau.<\/p>\n

Le 8 septembre 2011, Alex a subi une op\u00e9ration du cerveau de 14 heures suivie d'un s\u00e9jour de 6 semaines dans une unit\u00e9 de soins intensifs p\u00e9diatriques. Aussi p\u00e9nibles qu'aient \u00e9t\u00e9 l'op\u00e9ration et la longue hospitalisation, nous \u00e9tions loin de nous douter qu'il s'agissait de la partie la plus facile de notre voyage et qu'il ne s'agissait que de la partie \u00e9merg\u00e9e de l'iceberg auquel nous allions \u00eatre confront\u00e9s.<\/p>\n

Dix ans se sont \u00e9coul\u00e9s depuis le diagnostic et l'intervention chirurgicale et, en effet, nous avons \u00e9t\u00e9 confront\u00e9s \u00e0 des d\u00e9fis que nous n'aurions jamais pu imaginer le jour o\u00f9 nous l'avons ramen\u00e9 de l'h\u00f4pital. Nous avons d'une certaine mani\u00e8re relev\u00e9 les d\u00e9fis vertigineux que repr\u00e9sente la prise en charge de notre enfant m\u00e9dicalement fragile et nous avons su faire face \u00e0 tous ses besoins particuliers, avec suffisamment de succ\u00e8s pour c\u00e9l\u00e9brer le dixi\u00e8me anniversaire du diagnostic et de l'intervention chirurgicale. <\/p>\n<\/div>\n<\/p>\n<\/p>\n<\/p>\n

<\/p>\n

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ALEX, 18,5 ans.<\/p>\n<\/div>\n<\/figcaption><\/figure>\n<\/p><\/div>\n

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Si vous avez connu un parcours similaire, vous savez qu'\u00eatre parent d'un enfant atteint d'une maladie chronique qui met sa vie en danger, d'un handicap ou d'autres besoins particuliers est un v\u00e9ritable d\u00e9fi, mais que certains des aspects les plus difficiles sont li\u00e9s aux \u00e9l\u00e9ments suivants se sentir seul<\/em>. Les amis et la famille bien intentionn\u00e9s sont incapables de comprendre r\u00e9ellement nos luttes et m\u00eame les meilleurs professionnels de la sant\u00e9 de la plan\u00e8te sont incapables d'apporter des solutions \u00e0 tant de probl\u00e8mes auxquels nous sommes confront\u00e9s. <\/p>\n

Qui a donc la capacit\u00e9 de nous aider \u00e0 trouver les r\u00e9ponses \u00e0 nos probl\u00e8mes ?<\/p>\n

Dans le cas des maladies rares, nous devons nous tourner vers les personnes qui en sont atteintes. le plus de connaissances, d'exp\u00e9rience et d'int\u00e9r\u00eat pour les r\u00e9ponses : les patients et les soignants<\/em>...\u00c9TATS-UNIS<\/em>! Nous nous devons \u00e0 nous-m\u00eames et \u00e0 nos proches d'exploiter notre sagesse collective, nos exp\u00e9riences, nos ressources et notre motivation pour \u00eatre des guerriers et gagner la lutte contre les tumeurs c\u00e9r\u00e9brales et les ravages qu'elles ont caus\u00e9s dans nos vies.<\/p>\n

Heureusement, la Raymond A. Wood Foundation (RAWF), une organisation de d\u00e9fense des familles touch\u00e9es par les tumeurs c\u00e9r\u00e9brales, existe dans le seul but d'am\u00e9liorer la vie des survivants des tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires gr\u00e2ce \u00e0 l'acc\u00e8s \u00e0 l'\u00e9ducation, \u00e0 la technologie et \u00e0 l'\u00e9volution des traitements. RAWF a besoin de vous pour Rejoignez notre combat pour que nous puissions nous aider nous-m\u00eames<\/strong>. Si vous \u00eates comme moi, rien n'est plus important que votre sant\u00e9 ou celle de vos proches. Si vous \u00eates comme moi, vous \u00eates pr\u00eat \u00e0 faire tout ce qu'il faut pour vous battre afin d'obtenir des r\u00e9ponses \u00e0 des probl\u00e8mes qui n'ont pas encore \u00e9t\u00e9 r\u00e9solus, dans l'int\u00e9r\u00eat de votre sant\u00e9 ou de celle de votre proche. En devenant membre de la RAWF, vous investissez dans la lutte pour la qualit\u00e9 de vie des survivants de tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires.<\/p>\n

Unissons-nous<\/a> pour que nous puissions mener le bon combat. Vous joindrez-vous \u00e0 moi ? <\/p>\n<\/div>\n
\n
\n Devenir membre
\n <\/a>\n<\/div>\n

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Souhaitez-vous partager l'histoire d'un survivant ? <\/em>Envoyez-nous un courriel <\/em><\/a>pour contribuer \u00e0 notre blog.<\/em><\/p>\n

\n<\/div>","protected":false},"excerpt":{"rendered":"

Le 23 ao\u00fbt 2011, une tumeur c\u00e9r\u00e9brale appel\u00e9e craniopharyngiome a \u00e9t\u00e9 diagnostiqu\u00e9e chez Alex, notre fils \u00e2g\u00e9 de 8 ans \u00e0 l'\u00e9poque. On nous a dit que m\u00eame s'il survivrait probablement \u00e0 l'op\u00e9ration, il serait atteint de maladies chroniques, notamment \"diab\u00e8te insipide, panhypopituitarisme, ob\u00e9sit\u00e9 hypothalamique...\". Je n'ai pu absorber aucune explication sur la terminologie m\u00e9dicale, car j'\u00e9tais sous le choc d'apprendre que mon petit gar\u00e7on a eu une tumeur au cerveau<\/em>.<\/p>","protected":false},"author":6,"featured_media":116,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[19,35,1],"tags":[],"class_list":["post-115","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-caregiver-stories","category-craniopharyngioma","category-uncategorized","generate-columns","tablet-grid-50","mobile-grid-100","grid-parent","grid-33","no-featured-image-padding"],"acf":[],"yoast_head":"\nTen Year \u201cCranioversary\u201d Parent Reflection - Raymond A. 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