{"id":112328,"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-syndrom-nerwowo-czaszkowo-kregowy-choroba-filum-syndrom-arnolda-chiari-i-idiopatyczna-jamistosc-rdzenia-skolioza-idiopatyczna-wielopoziomowe-dyskopatie\/"},"modified":"2026-02-18T11:02:08","modified_gmt":"2026-02-18T10:02:08","slug":"sacha-ingles-arnolda-chiari-skolioza-jamistosc-rdzenia","status":"publish","type":"videos","link":"https:\/\/institutchiaribcn.com\/pl\/sacha-ingles-arnolda-chiari-skolioza-jamistosc-rdzenia\/","title":{"rendered":"Sacha Ingl\u00e9s Gomes dos Santos \u2013 Syndrom Nerwowo- Czaszkowo- Kr\u0119gowy, Choroba Filum, Syndrom Arnolda Chiari I, Idiopatyczna jamisto\u015b\u0107 rdzenia, Skolioza idiopatyczna, Wielopoziomowe dyskopatie."},"content":{"rendered":"
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<\/div>\n

Link: https:\/\/www.youtube.com\/embed\/OeF3SkjIYYw<\/a><\/p>\n

Data operacji: 04\/06\/2019<\/strong>
\nData nagrania: 14\/06\/2019<\/strong><\/p>\n

\"\"<\/p>\n

Rodzina z Angoli opowiada nam swoj\u0105 histori\u0119 na za\u0142\u0105czonym filmie. Pan H\u00e9lio Santos i Pani Neide Gomes maj\u0105 3 dzieci. Sacha, ich drugie dziecko, to dziewczynka w wieku 11 lat, u kt\u00f3rej zdiagnozowano Syndrom Arnolda Chiari I, kiedy mia\u0142a 2 latka. Opowiadaj\u0105, \u017ce na pocz\u0105tku niewiele wiedzieli o tej chorobie i trudno im by\u0142o j\u0105 zrozumie\u0107. Przypadek Sachy by\u0142 leczony przez grup\u0119 lekarzy z Portugalii, kt\u00f3rzy zalecili im wykonanie Odbarczenia szczytowo-potylicznego. Jednak w miar\u0119 up\u0142ywu czasu, rodzice zauwa\u017cyli, \u017ce objawy dziewczynki zacz\u0119\u0142y si\u0119 nasila\u0107 i \u017ce w ci\u0105gu 2 ostatnich lat nast\u0105pi\u0142o znaczne pogorszenie.<\/p>\n

Sacha nie mog\u0142a spa\u0107, co mia\u0142o wp\u0142yw na problemy z koncentracj\u0105 w szkole. ,,Wytrzymywa\u0142a 30 minut w szkole, po czym dzwonili do nas, aby j\u0105 z niej zabra\u0107\u2019\u2019, opowiada ojciec. Sytuacja w szkole pogorszy\u0142a si\u0119 jeszcze bardziej, kiedy dzieci zacz\u0119\u0142y nazywa\u0107 j\u0105 chor\u0105 i od tego czasu Sacha cierpia\u0142a z powodu bullyingu.<\/p>\n

,,Z ka\u017cdym dniem by\u0142o coraz ci\u0119\u017cej. Mieszkamy w Angoli, w miejscu gdzie jest bardzo ciep\u0142o i trudno by\u0142o jej si\u0119 bawi\u0107 i czu\u0107 si\u0119 zach\u0119con\u0105. Ostatnie lata by\u0142y okropne, przesta\u0142a wchodzi\u0107 w interakcje z lud\u017ami z powodu dyskomfortu jaki odczuwa\u0142a\u2019\u2019, m\u00f3wi ojciec. Sacha cierpia\u0142a na nudno\u015bci, b\u00f3le g\u0142owy, problemy ze wzrokiem tj. przej\u015bciowe za\u0107mienie, ,,migoc\u0105ce mroczki\u2019\u2019. Bola\u0142y j\u0105 tak\u017ce ko\u0144czyny, mia\u0142a problemy ze wstaniem, z powodu b\u00f3lu w nogach. Ostatnimi czasy dosz\u0142y tak\u017ce omdlenia. Jej mama, zacz\u0119\u0142a szuka\u0107 informacji w internecie i znalaz\u0142a
\nICSEB. ,,Widzia\u0142am, \u017ce jest to Instytut, kt\u00f3ry pracuje nad t\u0105 chorob\u0105 od ponad 40 lat i jako matka poczu\u0142am, \u017ce jest to co\u015b powa\u017cnego\u2019\u2019.<\/p>\n

10 dni po operacji Sachy, Pani Gomes m\u00f3wi, \u017ce jej c\u00f3rka czuje si\u0119 bardzo dobrze i \u017ce zmiany s\u0105 zauwa\u017calne. Dziewczynka nie odczuwa ju\u017c b\u00f3lu n\u00f3g i ramion, a tak\u017ce odzyska\u0142a si\u0142\u0119 w
\nr\u0119kach. ,,Jeste\u015bmy bardzo szcz\u0119\u015bliwi i wdzi\u0119czni lekarzom, Marcie, kt\u00f3ra by\u0142a zawsze przy nas, a tak\u017ce ca\u0142emu Instytutowi. Czuli\u015bmy obowi\u0105zek opowiedzenia o tym\u2019\u2019 \u2013 m\u00f3wi matka.<\/p>\n

Z mojej strony, m\u00f3wi ojciec, na pocz\u0105tku w\u0105tpi\u0142em troch\u0119 przed sprowadzeniem c\u00f3rki na leczenie do ICSEB. ,,Zdecydowali\u015bmy si\u0119 o tym porozmawia\u0107, poniewa\u017c na pocz\u0105tku mia\u0142em pewne w\u0105tpliwo\u015bci widz\u0105c Neide ze wszystkimi informacjami wyszukanymi z internetu. To co mnie przekona\u0142o to to, \u017ce otrzyma\u0142em szybk\u0105 odpowied\u017a po portugalsku, w moim j\u0119zyku ojczystym, a tak\u017ce komentarze pacjent\u00f3w zoperowanych w danej klinice. Wszystko to da\u0142o nam si\u0142\u0119 do tego, aby tu przyjecha\u0107\u2019\u2019.<\/p>\n

Na ko\u0144cu filmu, matka pyta Sach\u0119, czy zauwa\u017cy\u0142a zmiany, na co dziewczynka odpowiada, \u017ce tak, \u017ce jej stan zmieni\u0142 si\u0119 bardzo. ,,Chcia\u0142aby\u015b wr\u00f3ci\u0107 do przesz\u0142o\u015bci\u2019\u2019? pyta matka, gdzie Sacha szybko odpowiada: ,,Nie\u2019\u2019. ,,Jeste\u015b szcz\u0119\u015bliwa\u2019\u2019? Sacha podsumowuje: ,,Jestem bardzo szcz\u0119\u015bliwa\u2019\u2019.<\/p>\n

Email:\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":137386,"template":"","tipos-de-video":[595],"class_list":["post-112328","videos","type-videos","status-publish","has-post-thumbnail","hentry","tipos-de-video-historie-choroby-filmy"],"yoast_head":"\nSacha Ingl\u00e9s Gomes dos Santos : Chiari I | ICSEB<\/title>\n<meta name=\"description\" content=\"\u015awiadectwo Sacha Ingl\u00e9s Gomes dos Santos o Chiari I, jamisto\u015bci rdzenia i poprawie po operacji sekcji filum terminale.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/institutchiaribcn.com\/pl\/sacha-ingles-arnolda-chiari-skolioza-jamistosc-rdzenia\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" 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