{"id":5356,"date":"2021-06-08T19:13:33","date_gmt":"2021-06-08T19:13:33","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5356"},"modified":"2024-02-09T14:24:05","modified_gmt":"2024-02-09T14:24:05","slug":"individual-with-lgmd-jasmine","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2021\/06\/08\/individual-with-lgmd-jasmine\/","title":{"rendered":"OSOBA Z LGMD: Jasmine"},"content":{"rendered":"

\"Jasmine\"<\/p>\n

Nazwa<\/strong>: Jasmine<\/p>\n

Wiek<\/strong>24 lata<\/p>\n

Kraj<\/strong>: USA<\/p>\n

Podtyp LGMD<\/strong>: LGMD 2A\/R1 zwi\u0105zane z kalpain\u0105 3<\/p>\n

W jakim wieku zosta\u0142e\u015b zdiagnozowany?<\/strong>?<\/p>\n

Niedawno zdiagnozowano mnie w wieku 24 lat.<\/p>\n

Jakie by\u0142y pierwsze objawy? <\/strong><\/p>\n

Chodzenie na palcach by\u0142o moim pierwszym objawem. Zauwa\u017cy\u0142am os\u0142abienie, odk\u0105d by\u0142am ma\u0142\u0105 dziewczynk\u0105. Pami\u0119tam, \u017ce w szkole podstawowej, kiedy przysz\u0142a moja kolej na gr\u0119 w koszyk\u00f3wk\u0119 przeciwko przeciwnej dru\u017cynie, wstanie z pod\u0142ogi i przebiegni\u0119cie na drug\u0105 stron\u0119 boiska zajmowa\u0142o mi ca\u0142\u0105 wieczno\u015b\u0107. Podpiera\u0142am si\u0119 r\u0119kami na kolanach. W gimnazjum zacz\u0105\u0142em unika\u0107 schod\u00f3w, poniewa\u017c zauwa\u017cy\u0142em, \u017ce moje nogi zacz\u0119\u0142y s\u0142abn\u0105\u0107 podczas wchodzenia i schodzenia po schodach. Potem nagle nie mog\u0142em wej\u015b\u0107 na chodnik\/chodnik. Musia\u0142em podnosi\u0107 nog\u0119 za spodnie, pr\u00f3buj\u0105c wej\u015b\u0107 na g\u00f3r\u0119.<\/p>\n

Czy masz innych cz\u0142onk\u00f3w rodziny cierpi\u0105cych na LGMD?<\/strong>?<\/strong><\/p>\n

Jestem jedyn\u0105 osob\u0105 w mojej rodzinie, u kt\u00f3rej zdiagnozowano LGMD.<\/p>\n

Co uwa\u017casz za najwi\u0119ksze wyzwanie w \u017cyciu z LGMD?<\/strong>?<\/p>\n

Najwi\u0119kszym wyzwaniem w \u017cyciu z LGMD jest utrzymanie niezale\u017cno\u015bci tak d\u0142ugo, jak to mo\u017cliwe.<\/p>\n

Jakie jest twoje najwi\u0119ksze osi\u0105gni\u0119cie? <\/strong><\/p>\n

Niedawno uko\u0144czy\u0142em Georgia Military College z tytu\u0142em Associates Degree w Middle Grades Education. Jestem teraz nowym studentem transferowym na najlepszym \"University of Georgia\" na kierunku Middle Grades Education. Dobr\u0105 wiadomo\u015bci\u0105 jest to, \u017ce realizuj\u0119 program podw\u00f3jnego kierunku, w ramach kt\u00f3rego uko\u0144cz\u0119 studia magisterskie w tym samym czasie, co studia licencjackie! Planuj\u0119 zosta\u0107 nauczycielem matematyki (m\u00f3j ulubiony przedmiot). Ostatecznie planuj\u0119 rozwin\u0105\u0107 moje cele zawodowe nieco dalej, w zale\u017cno\u015bci od post\u0119p\u00f3w w moim MD: jako opcj\u0119 zapasow\u0105 lub ostateczn\u0105 planuj\u0119 zosta\u0107 profesorem uczelni online, gdzie mog\u0119 pozosta\u0107 w domu przez wi\u0119kszo\u015b\u0107 czasu i uczy\u0107 wst\u0119pnych wymaga\u0144 z j\u0119zyka angielskiego lub matematyki.<\/p>\n

Jak LGMD wp\u0142yn\u0119\u0142o na to, \u017ce sta\u0142e\u015b si\u0119 osob\u0105, kt\u00f3r\u0105 jeste\u015b dzisiaj?<\/strong>?<\/strong><\/p>\n

Choroba LGMD uczyni\u0142a mnie bardzo pokorn\u0105 i cierpliw\u0105 w ka\u017cdej sytuacji, kt\u00f3rej musz\u0119 stawi\u0107 czo\u0142a. Ponadto, nauczy\u0142am si\u0119 wielu fajnych sposob\u00f3w na dostosowanie si\u0119 do sytuacji, gdy jestem w domu i poza nim, zw\u0142aszcza teraz, w tym wieku i jako m\u0142oda kobieta w college'u, poruszaj\u0105ca si\u0119 po tym \u015bwiecie z MD!<\/p>\n

Co chcia\u0142by\u015b, aby \u015bwiat dowiedzia\u0142 si\u0119 o LGMD?<\/strong>?<\/p>\n

Chc\u0119, aby \u015bwiat wiedzia\u0142, \u017ce LGMD r\u00f3\u017cni si\u0119 od wi\u0119kszo\u015bci innych niepe\u0142nosprawno\u015bci. Je\u015bli upadniemy, nie mo\u017cemy wsta\u0107 z ziemi. Bior\u0105c to pod uwag\u0119, wzi\u0119cie r\u0119ki, aby pom\u00f3c nam wsta\u0107, nie dzia\u0142a w przypadku wi\u0119kszo\u015bci z nas. Musimy by\u0107 dos\u0142ownie ci\u0105gni\u0119ci za tali\u0119, aby wsta\u0107, dop\u00f3ki nie b\u0119dziemy w stanie zablokowa\u0107 naszego cia\u0142a w pozycji do stania. A kiedy nasze cia\u0142o jest przepracowane, regeneracja mo\u017ce zaj\u0105\u0107 kilka dni. Nie jeste\u015bmy w stanie wykona\u0107 niekt\u00f3rych prostych zada\u0144, kt\u00f3re wykonuj\u0105 osoby sprawne. Musimy r\u00f3wnie\u017c pomy\u015ble\u0107 o tym, zanim faktycznie wykonamy to konkretne zadanie. Z t\u0105 chorob\u0105 mamy tendencj\u0119 do sprawdzania ka\u017cdego miejsca przed wyjazdem, aby upewni\u0107 si\u0119, \u017ce jest ono dost\u0119pne i \u017ce mamy zakwaterowanie.<\/p>\n

Je\u015bli LGMD mo\u017ce by\u0107 <\/strong>\"<\/strong>wyleczony\" jutro, jaka by\u0142aby pierwsza rzecz, kt\u00f3r\u0105 chcia\u0142by\u015b zrobi\u0107?<\/strong>?<\/p>\n

Chcia\u0142bym wsta\u0107 z niskiego krzes\u0142a, poniewa\u017c jest to obecnie jedna z moich najwi\u0119kszych trudno\u015bci z LGMD.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5355,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,70],"class_list":["post-5356","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","tag-lgmd2a-calpainopathy-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Jasmine - LGMD Awareness Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"http:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2021\/06\/08\/individual-with-lgmd-jasmine\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Jasmine - 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