{"id":19222,"date":"2026-03-20T15:14:23","date_gmt":"2026-03-20T15:14:23","guid":{"rendered":"https:\/\/www.rawoodfoundation.org\/?p=19222"},"modified":"2026-03-20T15:20:24","modified_gmt":"2026-03-20T15:20:24","slug":"lespoir-pour-ho-lattente-est-finie","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/fr\/2026\/03\/20\/hope-for-ho-the-wait-is-over\/","title":{"rendered":"Espoir pour HO : L'attente est termin\u00e9e"},"content":{"rendered":"

\u00c0 la lumi\u00e8re de la r\u00e9cente approbation par la FDA du setmelanotide pour l'ob\u00e9sit\u00e9 hypothalamique, ce commentaire propose une r\u00e9flexion personnelle sur ce que signifie r\u00e9ellement cette \u00e9tape tant attendue. Pour ceux qui ont endur\u00e9 des ann\u00e9es sans options, il s'agit d'un changement profond - de la survie \u00e0 l'impossible \u00e0 l'espoir fond\u00e9 sur la science.<\/em><\/p>\n\n\n\n

par Eugenie Hsu, Ph.D.<\/em><\/p>\n\n\n\n

<\/p>\n\n\n\n

En 2011, mon fils, alors \u00e2g\u00e9 de 8 ans, a subi une intervention chirurgicale de 14 heures pour r\u00e9s\u00e9quer un craniopharyngiome g\u00e9ant, une tumeur c\u00e9r\u00e9brale rare. L'op\u00e9ration a \u00e9t\u00e9 suivie d'une hospitalisation de six semaines en USIP et de plusieurs mois de r\u00e9\u00e9ducation. On nous a dit qu'il aurait besoin de substituts hormonaux pour le reste de sa vie. Nous avons \u00e9galement appris qu'environ la moiti\u00e9 des survivants d'un craniopharyngiome devaient faire face \u00e0 un ensemble de sympt\u00f4mes beaucoup plus complexes li\u00e9s \u00e0 un hypothalamus endommag\u00e9, la petite structure du cerveau qui r\u00e9gule l'hom\u00e9ostasie.<\/p>\n\n\n\n

Il est rapidement apparu que son hypothalamus avait \u00e9t\u00e9 endommag\u00e9. Il n'avait pas de m\u00e9canisme de soif, ce qui rendait extr\u00eamement difficile la gestion de son sodium sanguin, car il ne pouvait pas compter sur la soif pour signaler la d\u00e9shydratation. Pourtant, l\u00e0 o\u00f9 sa soif \u00e9tait absente, sa faim \u00e9tait irr\u00e9sistible. Avec un app\u00e9tit incessant, il ne pensait qu'\u00e0 manger. Il a rapidement pris du poids malgr\u00e9 une surveillance stricte et des r\u00e9gimes restrictifs, et la vigilance constante est devenue insoutenable. Nous avons d\u00fb fermer la cuisine \u00e0 cl\u00e9 pour emp\u00eacher qu'il ne continue \u00e0 manger. Le manque d'acc\u00e8s l'a conduit \u00e0 voler de la nourriture, \u00e0 mentir \u00e0 ce sujet et \u00e0 ressentir une profonde honte lorsqu'il se faisait prendre. Une vie sociale normale \u00e9tait impossible, et nous craignions qu'il ne puisse jamais travailler ou rester seul sans surveillance. Vivre avec une ob\u00e9sit\u00e9 hypothalamique (HO) accompagn\u00e9e d'une hyperphagie (faim incessante) ressemblait \u00e0 un enfer sur terre.\u00a0<\/p>\n\n\n\n

\u00c0 l'\u00e9poque, il n'existait pas de traitement approuv\u00e9 pour l'HO.\u00a0<\/strong><\/p>\n\n\n\n

Mais je ne pouvais concevoir d'attendre interminablement un traitement alors que je voyais HO voler la vie de mon fils. Catalyseur puissant, le d\u00e9sespoir m'a pouss\u00e9e \u00e0 consulter la litt\u00e9rature scientifique, \u00e0 la recherche de tout signe de possibilit\u00e9. J'ai commenc\u00e9 \u00e0 lire sur l'ocytocine, un neuropeptide connu pour son r\u00f4le dans les liens sociaux, mais \u00e9galement impliqu\u00e9 dans la r\u00e9gulation de l'app\u00e9tit et du m\u00e9tabolisme. L'hypothalamus produit l'ocytocine. Les l\u00e9sions de l'hypothalamus la perturbent. Le remplacement ou l'augmentation de l'ocytocine pourrait-il contribuer \u00e0 restaurer une partie de ce qui a \u00e9t\u00e9 perdu ? \u00c0 l'appui de cette th\u00e9orie, j'ai \u00e9galement appris que l'ocytocine faisait l'objet de recherches en tant que traitement possible de l'hyperphagie dans le syndrome de Prader Willi.<\/p>\n\n\n\n

Avec les conseils et la supervision d'un m\u00e9decin dispos\u00e9 \u00e0 prescrire de l'ocytocine et d'un autre dispos\u00e9 \u00e0 servir de consultant m\u00e9dical, j'ai commenc\u00e9 un traitement exp\u00e9rimental sur mon fils que j'ai appel\u00e9 \"l'exp\u00e9rience de l'ocytocine\". J'ai document\u00e9 chaque \u00e9tape - chaque observation, chaque \u00e9chec, chaque moment d'espoir - dans un blog qui allait \u00eatre lu dans le monde entier : Espoir pour HO<\/em>. Ce qui a commenc\u00e9 comme une chronique personnelle est devenu une bou\u00e9e de sauvetage pour d'autres familles qui cherchaient, comme nous, des r\u00e9ponses dans l'obscurit\u00e9. En 2018, l'exp\u00e9rience a finalement abouti \u00e0 la publication, en tant que co-auteur, d'une \u00e9tude de cas dans la revue Journal of Clinical Endocrinology & Metabolism (en anglais)<\/em>,<\/a> Le traitement a apport\u00e9 un \u00e9l\u00e9ment de preuve, petit mais significatif, \u00e0 un probl\u00e8me qui avait d\u00e9sesp\u00e9r\u00e9ment besoin d'\u00eatre r\u00e9solu. Bien qu'il s'agisse d'un traitement efficace \u00e0 l'\u00e9poque, il ne s'agit pas d'une solution permanente. Mais il a apport\u00e9 un petit \u00e9l\u00e9ment de recherche scientifique qui a fini par d\u00e9boucher sur d'autres recherches scientifiques, jusqu'\u00e0 ce qu'il y ait enfin un v\u00e9ritable espoir pour l'HO.<\/p>\n\n\n\n

Aujourd'hui, quinze ans apr\u00e8s le diagnostic de mon fils, une chose autrefois inimaginable s'est produite : la Food and Drug Administration (FDA) des \u00c9tats-Unis a approuv\u00e9 l'utilisation de l'insuline dans le traitement de l'ob\u00e9sit\u00e9. Imcivree\u00ae (setmelanotide)<\/a>Le premier m\u00e9dicament sp\u00e9cifiquement indiqu\u00e9 pour l'HO et l'hyperphagie.<\/p>\n\n\n\n

Ce moment repr\u00e9sente bien plus que l'arriv\u00e9e d'un seul m\u00e9dicament. Pour les familles nouvellement diagnostiqu\u00e9es, le paysage n'est plus st\u00e9rile. On ne leur dira plus simplement d'endurer. Elles n'auront pas \u00e0 faire face \u00e0 cette maladie sans pouvoir b\u00e9n\u00e9ficier d'un traitement m\u00e9dical. Elles n'auront pas \u00e0 s'en remettre uniquement \u00e0 des solutions improvis\u00e9es, n\u00e9es du d\u00e9sespoir.<\/p>\n\n\n\n

Il reste encore beaucoup \u00e0 faire. Aucun traitement n'est curatif. L'ob\u00e9sit\u00e9 hypothalamique reste complexe, h\u00e9t\u00e9rog\u00e8ne et tr\u00e8s difficile \u00e0 traiter. L'acc\u00e8s doit \u00eatre garanti. La recherche doit se poursuivre. Des th\u00e9rapies suppl\u00e9mentaires doivent \u00eatre d\u00e9velopp\u00e9es. Mais le changement psychologique - de rien \u00e0 quelque chose - est profond.<\/p>\n\n\n\n

Pour ceux d'entre nous qui ont v\u00e9cu les ann\u00e9es du n\u00e9ant, cette approbation ressemble \u00e0 un profond soupir de soulagement. Elle honore les familles qui ont endur\u00e9 l'absence d'options. Elle refl\u00e8te le courage des survivants qui ont particip\u00e9 aux essais cliniques. Elle reconna\u00eet les chercheurs qui ont pers\u00e9v\u00e9r\u00e9 dans l'\u00e9tude d'une maladie rare et difficile.<\/p>\n\n\n\n

 Il y a quinze ans, lorsque mon fils a \u00e9t\u00e9 diagnostiqu\u00e9, nous nous trouvions au bord d'un terrain inconnu, sans carte. Aujourd'hui, il existe un traitement et enfin une voie \u00e0 suivre.<\/p>\n\n\n\n

\n

Pour ceux d'entre nous qui ont v\u00e9cu les ann\u00e9es du n\u00e9ant, cette approbation ressemble \u00e0 un profond soupir de soulagement. Elle honore les familles qui ont endur\u00e9 l'absence d'options. Elle refl\u00e8te le courage des survivants qui ont particip\u00e9 aux essais cliniques. Elle reconna\u00eet les chercheurs qui ont pers\u00e9v\u00e9r\u00e9 dans l'\u00e9tude d'une maladie rare et difficile.
<\/p>\n<\/blockquote>\n\n\n\n

\n
\"\"<\/figure>\n\n\n\n

Eugenie Hsu, Ph.D<\/a> est psychologue dipl\u00f4m\u00e9e, aidante d'un survivant d'un craniopharyngiome et pr\u00e9sidente du conseil d'administration de la RAWF. <\/p>\n<\/div>\n\n\n\n

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

A la lumi\u00e8re de la r\u00e9cente approbation par la FDA du setmelanotide pour l'ob\u00e9sit\u00e9 hypothalamique, ce commentaire propose ... Lire plus<\/a><\/p>","protected":false},"author":6,"featured_media":19231,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[19,42,30],"tags":[],"class_list":["post-19222","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-caregiver-stories","category-health-medical","category-rawf-news","generate-columns","tablet-grid-50","mobile-grid-100","grid-parent","grid-33","no-featured-image-padding"],"acf":[],"yoast_head":"\nHope for HO: The Wait is Over - Raymond A. 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