{"id":111969,"date":"2021-02-05T00:00:11","date_gmt":"2021-02-04T23:00:11","guid":{"rendered":"https:\/\/dev.institutchiaribcn.com\/videos\/sacha-ingles-gomes-dos-santos-syndrome-neuro-cranio-vertebrale-maladie-du-filum-syndrome-darnold-chiari-i-syringomyelie-et-scoliose-idiopathiques-et-discopathies-multiples\/"},"modified":"2026-03-10T09:36:20","modified_gmt":"2026-03-10T08:36:20","slug":"fille-angolaise-chiari-bullying","status":"publish","type":"videos","link":"https:\/\/institutchiaribcn.com\/fr\/fille-angolaise-chiari-bullying\/","title":{"rendered":"Sacha Ingl\u00e9s Gomes dos Santos \u2013 Syndrome Neuro-Cr\u00e2nio Vert\u00e9brale, Maladie du Filum, Syndrome d\u2019Arnold Chiari I, Syringomy\u00e9lie et Scoliose idiopathiques et Discopathies Multiples."},"content":{"rendered":"
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Link: https:\/\/www.youtube.com\/embed\/OeF3SkjIYYw<\/a><\/p>\n

Date d\u2019intervention: 04\/06\/2019<\/strong>
\nDate de tournage: 14\/06\/2019<\/strong><\/p>\n

\"\"<\/p>\n

Cette famille angolaise nous raconte son histoire dans cette vid\u00e9o. Mr. H\u00e9lio Santos et Mme Neide Gomes ont trois enfants. Sacha, de 11 ans, la deuxi\u00e8me, a re\u00e7u un diagnostic de syndrome d\u2019Arnold-Chiari I \u00e0 l\u2019\u00e2ge de 2 ans. Ils disent qu\u2019au d\u00e9but ils en savaient peu sur la maladie et qu\u2019il leur \u00e9tait difficile de la comprendre. Le cas de Sacha a \u00e9t\u00e9 trait\u00e9 par un groupe de m\u00e9decins du Portugal, qui leur a dit de faire une Craniectomie sous-occipitale plus tard. Cependant, au fil du temps, les parents ont remarqu\u00e9 que les sympt\u00f4mes de la fille augmentaient et que, au cours des deux derni\u00e8res ann\u00e9es, la fille avait souffert une aggravation significative.<\/p>\n

Sacha ne pouvait plus dormir. \u00c0 l\u2019\u00e9cole, elle ne pouvait pas se concentrer. \u00ab\u00a0Elle restait 30 minutes \u00e0 l\u2019\u00e9cole et d\u00e9j\u00e0 ils nous ont appel\u00e9s pour venir la chercher\u00a0\u00bb, raconte le p\u00e8re. Las situation \u00e0 l\u2019\u00e9cole a empir\u00e9 parce que les enfants l\u2019ont appel\u00e9e malade et c\u2019est \u00e0 ce moment-l\u00e0 que Sacha a commenc\u00e9 \u00e0 souffrir de bullying<\/i>.<\/p>\n

\u00ab\u00a0Cela devenait de plus en plus difficile chaque jour. Nous vivons \u00e0 Angola, o\u00f9 il fait tr\u00e8s chaud et il lui \u00e9tait difficile de pouvoir jouer et de se sentir encourag\u00e9e. Les derni\u00e8res ann\u00e9es ont \u00e9t\u00e9 horribles, elle a cess\u00e9 d\u2019interagir avec les gens \u00e0 cause de l\u2019inconfort qu\u2019elle ressentait\u00a0\u00bb, raconte le p\u00e8re. Sacha souffrait de naus\u00e9es, de maux de t\u00eate, de probl\u00e8mes de vision\u00a0; comme l\u2019amaurose fugace et les scotomes scintillants Ses membres lui faisaient \u00e9galement mal, parfois elle ne pouvait pas se lever \u00e0 cause de ses douleurs aux jambes. Plus r\u00e9cemment, elle a commenc\u00e9 \u00e0 avoir des \u00e9vanouissements. Pour tout cela, la m\u00e8re a commenc\u00e9 \u00e0 faire des recherches sur Internet et a trouv\u00e9 l\u2019ICSEB. \u00ab\u00a0J\u2019ai vu que c\u2019\u00e9tait un Institut qui travaille avec cette maladie depuis plus de 40 ans et, en tant que m\u00e8re, j\u2019ai senti que c\u2019\u00e9tait un travail s\u00e9rieux. \u00bb<\/p>\n

Dix jours apr\u00e8s l\u2019intervention de Sacha, Mme Gomes dit que sa fille va tr\u00e8s bien et que les changements sont remarquables. \u00ab\u00a0Maintenant, elle dort toute la nuit, ce qui est incroyable. Elle dit \u00e9galement que la fille ne ressent plus de douleur dans ses jambes et ses bras et qu\u2019elle a repris des forces dans ses mains. \u00ab\u00a0Nous sommes tr\u00e8s heureux et nous sommes tr\u00e8s reconnaissants aux m\u00e9decins, \u00e0 Marta, qui a \u00e9t\u00e9 tr\u00e8s attentive, et \u00e0 l\u2019Institut. Nous avons voulu laisser notre t\u00e9moignage\u00a0\u00bb, raconte la m\u00e8re.<\/p>\n

De son c\u00f4t\u00e9, le p\u00e8re raconte qu\u2019au d\u00e9bit il h\u00e9sitait un peu \u00e0 amener sa fille pour se faire traiter \u00e0 l\u2019ICSEB. \u00ab\u00a0Nous avons d\u00e9cid\u00e9 de parler car en fait, en tant que parent, je suis un peu plus inquiet et quand je suis tomb\u00e9 sur Neide avec toutes les donn\u00e9es prises sur Internet, j\u2019avais quelques doutes. Ce qui m\u2019a le plus convaincu, c\u2019est le faite que j\u2019ai re\u00e7u une r\u00e9ponse rapide en portugais et aussi avoir pu lire les commentaires et voir diff\u00e9rentes personnes, voir d\u2019ou elles venaient, tout cela nous a donn\u00e9 la force de venir ici.\u00a0\u00bb<\/p>\n

\u00c0 la fin de la vid\u00e9o, la m\u00e8re a demand\u00e9 \u00e0 Sacha si elle avait remarqu\u00e9 des changements et la fille a r\u00e9pondu que oui, sa situation avait beaucoup chang\u00e9. \u00ab\u00a0Est-ce que tu retourner dans le pass\u00e9?\u00a0\u00bb, lui demande sa m\u00e8re et Sacha lui r\u00e9pond rapidement que non. Est-tu contente\u00a0? Et Sacha conclut\u00a0: \u00ab\u00a0Je me sens tr\u00e8s heureuse.\u00a0\u00bb<\/p>\n

Email de contact:\u00a0neidegomes@live.com.pt<\/a><\/p>\n

    \n
  1. (*) Royo-Salvador, M.B., Fiallos-Rivera, M.V., Salca, H.C. et al. The Filum disease and the Neuro-Cranio-vertebral syndrome: definition, clinical picture and imaging features. BMC Neurol 20, 175 (2020). https:\/\/doi.org\/10.1186\/s12883-020-01743-y<\/a> , https:\/\/rdcu.be\/b36Pi<\/a><\/li>\n<\/ol>\n<\/div>\n","protected":false},"featured_media":137381,"template":"","tipos-de-video":[590],"class_list":["post-111969","videos","type-videos","status-publish","has-post-thumbnail","hentry","tipos-de-video-videos-temoignages"],"yoast_head":"\nSacha Ingl\u00e9s Gomes dos Santos : Chiari I | ICSEB<\/title>\n<meta name=\"description\" content=\"Vid\u00e9o t\u00e9moignage de Sacha Ingl\u00e9s Gomes dos Santos, atteinte du syndrome d\u2019Arnold-Chiari I. 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