{"id":33,"date":"2019-03-17T12:34:51","date_gmt":"2019-03-17T12:34:51","guid":{"rendered":"https:\/\/live-rawf.pantheonsite.io\/2019\/03\/17\/2019-3-17-pituitary-brain-tumor-day-a-retrospective\/"},"modified":"2023-08-01T19:31:01","modified_gmt":"2023-08-01T19:31:01","slug":"2019-3-17-jour-de-tumeur-cerebrale-hypophysaire-une-retrospective","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/fr\/2019\/03\/17\/2019-3-17-pituitary-brain-tumor-day-a-retrospective\/","title":{"rendered":"Journ\u00e9e de la tumeur c\u00e9r\u00e9brale hypophysaire - Une r\u00e9trospective"},"content":{"rendered":"
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Pour ceux qui ont suivi notre histoire depuis le diagnostic d'Alex, vous m'avez peut-\u00eatre entendu dire \u00e0 maintes reprises que ce voyage comporte des b\u00e9n\u00e9dictions. La journ\u00e9e d'hier a \u00e9t\u00e9 un exemple de l'une de ces b\u00e9n\u00e9dictions.<\/p>\n

La Journ\u00e9e de la tumeur c\u00e9r\u00e9brale hypophysaire au Children's Hospital of Philadelphia (CHOP) est une id\u00e9e qui a germ\u00e9 il y a pr\u00e8s d'un an lors d'un rendez-vous de suivi endocrinologique de routine pour Alex, o\u00f9 nous avons eu le plaisir de rencontrer le Dr Craig Alter, chef de la clinique de neuroendocrinologie. C'est le Dr Karla Leavens, l'endocrinologue d'Alex, qui a fait les pr\u00e9sentations, apr\u00e8s avoir parl\u00e9 au Dr Alter du travail que nous faisions avec la fondation. Nous avons commenc\u00e9 \u00e0 discuter et il a mentionn\u00e9 qu'il organisait une conf\u00e9rence pour d'autres m\u00e9decins sur tous les probl\u00e8mes endocriniens qui r\u00e9sultent g\u00e9n\u00e9ralement de tumeurs c\u00e9r\u00e9brales hypophysaires comme le craniopharyngiome, la tumeur d'Alex. <\/p>\n

J'ai imm\u00e9diatement demand\u00e9 si les parents pouvaient venir. Il m'a r\u00e9pondu qu'il pourrait peut-\u00eatre organiser un \u00e9v\u00e9nement destin\u00e9 aux parents. Ce serait formidable - une journ\u00e9e d'apprentissage et d'\u00e9change d'informations avec ces m\u00e9decins et la rencontre d'autres familles seraient une telle opportunit\u00e9. Les maladies de nos enfants sont si rares qu'\u00e0 ma connaissance, il n'existe pas d'\u00e9v\u00e9nement pour les parents qui couvre tous ces sujets. <\/p>\n

Le Dr Alter a donc promis de prendre contact et de discuter plus avant, et quelques semaines plus tard, la planification a commenc\u00e9. Il a fait appel \u00e0 une autre maman militante, Catherine Chiang, et \u00e0 une autre endocrinologue extr\u00eamement d\u00e9vou\u00e9e, le Dr Shana McCormack. Avec l'aide de Catrice Butler, du bureau de formation m\u00e9dicale continue (FMC) du CHOP, l'\u00e9v\u00e9nement a \u00e9t\u00e9 organis\u00e9 en moins d'un an.  <\/p>\n

Hier, en regardant dans la salle les visages venus de l'\u00c9tat de Washington, de Californie, du Texas, du Michigan, de l'Arkansas, de Floride, de Virginie, du Maryland, du New Jersey et, bien s\u00fbr, de Pennsylvanie, j'ai ressenti une profonde gratitude pour la r\u00e9alisation de cette journ\u00e9e et pour ces m\u00e9decins qui sont \u00e0 la fois passionn\u00e9s par leur travail et compatissants \u00e0 l'\u00e9gard des situations rares et difficiles de leurs patients et de nos luttes en tant que parents pour g\u00e9rer ces affections.<\/p>\n

Les tumeurs de l'hypophyse peuvent \u00eatre canc\u00e9reuses ou non. En g\u00e9n\u00e9ral, on peut y survivre, mais lorsqu'il s'agit de les localiser, elles se trouvent parmi des structures tr\u00e8s d\u00e9licates et importantes pour le fonctionnement g\u00e9n\u00e9ral de l'organisme : la glande pituitaire et l'hypothalamus. Les l\u00e9sions de ces structures ont un impact sur toutes les parties du corps, notamment la faim et la soif, le m\u00e9tabolisme, la r\u00e9gulation des fluides corporels, la croissance, la r\u00e9gulation de la temp\u00e9rature, la lib\u00e9ration de cortisol pour la r\u00e9ponse au stress, le comportement, le sommeil, la pubert\u00e9, la fertilit\u00e9 et les liens sociaux. G\u00e9rer efficacement ces probl\u00e8mes pour parvenir \u00e0 un \u00e9quilibre appropri\u00e9 et \u00e0 une qualit\u00e9 de vie acceptable est une t\u00e2che \u00e9crasante. <\/p>\n

L'endocrinologie est une sp\u00e9cialit\u00e9 complexe qui exige du m\u00e9decin qu'il soit tr\u00e8s pr\u00e9sent aupr\u00e8s des patients, en particulier des enfants, et pas seulement lors des rendez-vous de suivi de routine. Il ne s'agit pas de m\u00e9decins qui vous re\u00e7oivent pendant quinze minutes, facturent l'assurance et s'en vont. Les rendez-vous en endocrinologie pour les patients panhypopituitaires peuvent durer une heure, voire des heures, et il y a toujours des donn\u00e9es \u00e0 analyser, des examens de laboratoire \u00e0 passer en revue, des courbes de croissance et de poids \u00e0 expliquer, des m\u00e9dicaments \u00e0 ajuster et des \u00e9motions \u00e0 g\u00e9rer de la part des patients et des parents. Il y a toujours des conversations \u00e0 avoir entre les rendez-vous et des parents inquiets qui t\u00e9l\u00e9phonent en panique \u00e0 propos de choses qui semblent \"anormales\". <\/p>\n

Hier, ces m\u00e9decins ont consacr\u00e9 leur temps \u00e0 cet \u00e9v\u00e9nement, r\u00e9pondant gracieusement \u00e0 toutes les questions sans aucune trace de sup\u00e9riorit\u00e9 ou d'ego. Ces m\u00e9decins sont intelligents en ce sens qu'ils reconnaissent que beaucoup d'entre nous, parents, avons un cas unique pour leurs cas multiples et que nous sommes d\u00e9termin\u00e9s \u00e0 d\u00e9couvrir tout ce qu'il y a \u00e0 savoir sur la fa\u00e7on d'am\u00e9liorer la vie de nos enfants. Nous n'avons pas de dipl\u00f4me de m\u00e9decine, mais nous lisons d'innombrables revues et rapports m\u00e9dicaux et essayons de donner un sens aux donn\u00e9es. Nous devenons des experts de notre \"patient unique\" et nous acqu\u00e9rons des connaissances gr\u00e2ce \u00e0 notre r\u00e9seau de parents en ligne. Ces m\u00e9decins ont compris l'int\u00e9r\u00eat de s'appuyer sur ce r\u00e9seau. Il s'agissait d'un v\u00e9ritable esprit de collaboration. <\/p>\n

De tr\u00e8s nombreux sujets ont \u00e9t\u00e9 abord\u00e9s hier \u00e0 un haut niveau devant un public de personnes se trouvant \u00e0 des stades diff\u00e9rents de leur parcours. Certains sont si nouveaux que leur enfant a \u00e9t\u00e9 hospitalis\u00e9, quelques semaines seulement apr\u00e8s la r\u00e9section d'une tumeur c\u00e9r\u00e9brale. D'autres sont nos \"v\u00e9t\u00e9rans\", comme Eugenie Hsu, qui d\u00e9fend la cause de l'ocytocine, l'une des hormones qui n'est pas encore remplac\u00e9e chez nos enfants, mais qui est \u00e9tudi\u00e9e au CHOP. Marci Serota, une autre maman militante, di\u00e9t\u00e9ticienne dipl\u00f4m\u00e9e et auteur de En qu\u00eate de solutions<\/em>Les m\u00e9decins du CHOP ont pr\u00e9sent\u00e9 les points cl\u00e9s de la gestion de la nutrition des enfants souffrant d'ob\u00e9sit\u00e9 hypothalamique - l'un des effets secondaires les plus difficiles d'une tumeur c\u00e9r\u00e9brale hypophysaire. Les m\u00e9decins du CHOP ont parl\u00e9 du sommeil, du comportement, du dosage du stress, de la gestion du diab\u00e8te insipide, du processus d'induction de la pubert\u00e9 et des implications psychosociales des tumeurs c\u00e9r\u00e9brales pour les patients et leurs familles. Je pense que chacun est reparti avec quelque chose - que ce soit de nouvelles connaissances ou un nouvel ami avec qui partager la vie sur ce chemin. Le simple fait d'entrer en contact avec d'autres familles est d'une grande valeur.<\/p>\n

Il convient de noter que chaque d\u00e9tail a \u00e9t\u00e9 pris en compte, y compris le choix d'un menu pour le petit-d\u00e9jeuner et le d\u00e9jeuner qui respectait les directives di\u00e9t\u00e9tiques \u00e9tablies par Marci Serota en mati\u00e8re de nutrition pour les patients atteints d'HO. Pas de desserts sucr\u00e9s ni de p\u00e2tisseries comme on en voit habituellement lors des conf\u00e9rences.<\/p>\n

Un grand merci au Dr Craig Alter, au Dr Shana McCormack, \u00e0 Catrice Butler, \u00e0 Catherine Chiang et \u00e0 la famille Chiang, \u00e0 Marci Serota, \u00e0 Eugenie Hsu pour avoir travaill\u00e9 \u00e0 la promotion de l'\u00e9v\u00e9nement, aux groupes de parents, aux intervenants, \u00e0 Ellen Waters, membre du conseil d'administration de RAWF, qui est venue apporter son aide, \u00e0 l'H\u00f4pital pour enfants de Philadelphie, aux familles qui ont fait le voyage pour participer \u00e0 cette journ\u00e9e et aux donateurs et sympathisants de RAWF qui ont contribu\u00e9 \u00e0 rendre cette journ\u00e9e possible. Nous esp\u00e9rons que cette journ\u00e9e sera encore meilleure l'ann\u00e9e prochaine !<\/p>\n<\/div>\n

<\/p>\n
\n

\n

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

Pour ceux qui ont suivi notre histoire depuis le diagnostic d'Alex, vous m'avez peut-\u00eatre entendu dire \u00e0 maintes reprises que ce voyage comporte des b\u00e9n\u00e9dictions. Parfois, dans les jours difficiles, c'est un rappel \u00e0 moi-m\u00eame pour passer \u00e0 travers cette journ\u00e9e, comme une affirmation, et parfois, quand je le dis, c'est une expression de joie. Hier, il y a eu de nombreux moments de joie. <\/p>","protected":false},"author":6,"featured_media":34,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[8,1],"tags":[],"class_list":["post-33","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-events","category-uncategorized","generate-columns","tablet-grid-50","mobile-grid-100","grid-parent","grid-33","no-featured-image-padding"],"acf":[],"yoast_head":"\nPituitary Brain Tumor Day - A Retrospective - Raymond A. 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