{"id":5172,"date":"2021-05-17T20:23:28","date_gmt":"2021-05-17T20:23:28","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5172"},"modified":"2024-02-09T14:24:21","modified_gmt":"2024-02-09T14:24:21","slug":"5172","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2021\/05\/17\/5172\/","title":{"rendered":"OSOBA Z LGMD: Maria"},"content":{"rendered":"
\"Lgmd1b<\/span><\/div>

\u00a0<\/strong><\/p>\n

Nazwa<\/strong>: Maria Wiek<\/strong>29 lat<\/p>\n

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

Podtyp LGMD<\/strong>: LGMD 1B<\/p>\n

 <\/p>\n

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

Pocz\u0105tkowo, w wieku dw\u00f3ch lat, zdiagnozowano u mnie SMA. Nast\u0119pnie w wieku 15 lat ponownie zdiagnozowano u mnie dystrofi\u0119 mi\u0119\u015bniow\u0105 ko\u0144czyn dolnych.<\/p>\n

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

Moi rodzice powiedzieli, \u017ce zacz\u0105\u0142em chodzi\u0107 dopiero w wieku 17 miesi\u0119cy. Chodzi\u0142em r\u00f3wnie\u017c z kaczkowatym chodem i u\u017cywa\u0142em r\u0105k, aby pom\u00f3c mi wsta\u0107 z pozycji siedz\u0105cej jako maluch.<\/p>\n

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

Nie, jestem jedyn\u0105 osob\u0105 w mojej rodzinie cierpi\u0105c\u0105 na LGMD.<\/p>\n

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

Psychicznie: Za\u0142o\u017cenie, \u017ce nie prowadzimy normalnego \u017cycia jest dla mnie najwi\u0119kszym wyzwaniem. Fizycznie: Nauka akceptowania post\u0119p\u00f3w, gdy zauwa\u017cam, \u017ce co\u015b s\u0142abnie.<\/p>\n

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

Zdobycie prawa jazdy i w\u0142asnego samochodu. Proces ten trwa\u0142 d\u0142ugie dwa lata. Wydawa\u0142o si\u0119, \u017ce nigdy nie wida\u0107 ko\u0144ca. Posiadanie samochodu zmieni\u0142o moje \u017cycie i pomaga mi zachowa\u0107 niezale\u017cno\u015b\u0107.<\/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><\/p>\n

To zdecydowanie ukszta\u0142towa\u0142o moj\u0105 osobowo\u015b\u0107 i to, kim jestem. Moja zaciek\u0142a osobowo\u015b\u0107 wynika z determinacji, by pokaza\u0107 innym, \u017ce jeste\u015bmy w stanie. Moja nami\u0119tna strona pochodzi z walki od pierwszego dnia, nawet jako dziecko. Dorastanie z niepe\u0142nosprawno\u015bci\u0105 ukszta\u0142towa\u0142o mnie na wi\u0119cej sposob\u00f3w, ni\u017c m\u00f3g\u0142bym sobie wyobrazi\u0107. Wiem, \u017ce ta choroba uczyni\u0142a ze mnie Mari\u0119, kt\u00f3r\u0105 wszyscy znaj\u0105.<\/p>\n

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

Chc\u0119, aby ludzie wiedzieli, \u017ce jest to rzadka choroba, wi\u0119c nie ma na ni\u0105 leczenia ani lekarstwa. Chc\u0119 te\u017c krzycze\u0107 z g\u00f3rskich szczyt\u00f3w, \u017ce to nie jest stwardnienie rozsiane!<\/p>\n

Gdyby jutro mo\u017cna by\u0142o \"wyleczy\u0107\" chorob\u0119 LGMD, co by\u0142oby pierwsz\u0105 rzecz\u0105, kt\u00f3r\u0105 chcia\u0142by\u015b zrobi\u0107?<\/strong>:<\/p>\n

Pobieg\u0142abym odebra\u0107 moje pi\u0119\u0107 siostrzenic i siostrze\u0144c\u00f3w. Poszed\u0142bym do centrum handlowego i wybra\u0142 str\u00f3j, nie martwi\u0105c si\u0119 o to, \u017ce jestem zbyt chudy, by zmie\u015bci\u0107 si\u0119 w cokolwiek. A potem pewnie poszed\u0142bym pogra\u0107 w puttowanie. To zdecydowanie co\u015b, za czym t\u0119skni\u0119, a co kiedy\u015b by\u0142o ogromn\u0105 cz\u0119\u015bci\u0105 mojego dzieci\u0144stwa. M\u00f3j tata zabiera\u0142 mnie i moje siostry prawie co tydzie\u0144, wi\u0119c sta\u0142o si\u0119 to jedn\u0105 z moich ulubionych rzeczy do robienia.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5173,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,44],"tags":[],"class_list":["post-5172","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd1b"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD:\u00a0 Maria - 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=\"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2021\/05\/17\/5172\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD:\u00a0 Maria - 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