{"id":1564,"date":"2017-09-11T15:56:15","date_gmt":"2017-09-11T20:56:15","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1564"},"modified":"2017-09-11T15:56:15","modified_gmt":"2017-09-11T20:56:15","slug":"karen-2","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2017\/09\/11\/karen-2\/","title":{"rendered":"OSOBA Z LGMD: Karen"},"content":{"rendered":"

LGMD \"Wywiad w centrum uwagi\"<\/strong><\/p>\n

Nazwa<\/strong>: Karen \u00a0Wiek<\/strong>: 54 lata\"\"<\/a><\/p>\n

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

Podtyp LGMD<\/strong>: LGMD 2I<\/p>\n

 <\/p>\n

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

Zdiagnozowano mnie w wieku 33 lat.<\/p>\n

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

Moim pierwszym objawem by\u0142a og\u00f3lna s\u0142abo\u015b\u0107 w por\u00f3wnaniu do innych dzieci na zaj\u0119ciach w-f w szkole podstawowej. W szkole \u015bredniej by\u0142o jeszcze gorzej. Mia\u0142em napi\u0119te mi\u0119\u015bnie \u015bci\u0119gien podkolanowych i \u0142ydek. Moje \u0142ydki by\u0142y du\u017ce. Nast\u0119pnym objawem by\u0142a zauwa\u017calna zmiana w moim chodzie.<\/p>\n

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

Nie, jestem jedynym cz\u0142onkiem rodziny, u kt\u00f3rego zdiagnozowano LGMD.<\/p>\n

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

Najwi\u0119ksze wyzwania zwi\u0105zane z \u017cyciem z LGMD to wykonywanie codziennych zada\u0144 osobistych i domowych, zarz\u0105dzanie aktywno\u015bci\u0105 i odpoczynkiem, przygotowanie do korzystania z przestrzeni publicznej oraz planowanie przysz\u0142ych potrzeb.<\/p>\n

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

Dzi\u0119ki mi\u0142o\u015bci i wsparciu mojej rodziny i przyjaci\u00f3\u0142, ciesz\u0119 si\u0119 \u017cyciem i do\u015bwiadczam go pomimo ci\u0105gle zmieniaj\u0105cych si\u0119 ogranicze\u0144 i przeszk\u00f3d. To moje najwi\u0119ksze osi\u0105gni\u0119cie.<\/p>\n

Jak LGMD wp\u0142yn\u0119\u0142o na to, \u017ce sta\u0142e\u015b si\u0119 osob\u0105, kt\u00f3r\u0105 jeste\u015b DZI\u015a?<\/strong><\/p>\n

\u017bycie z LGMD ukszta\u0142towa\u0142o mnie jako osob\u0119 akceptuj\u0105c\u0105, zdeterminowan\u0105, zaradn\u0105, pokorn\u0105 i wdzi\u0119czn\u0105. Nauczy\u0142am si\u0119 akceptowa\u0107 moj\u0105 diagnoz\u0119 i zdawa\u0107 sobie spraw\u0119, \u017ce wraz z jej post\u0119pem, daje mi ona mo\u017cliwo\u015b\u0107 rozwoju jako osoby.<\/p>\n

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

LGMD jest chorob\u0105 post\u0119puj\u0105c\u0105. Wp\u0142ywa na ka\u017cd\u0105 my\u015bl, kt\u00f3ra towarzyszy ka\u017cdemu ruchowi ka\u017cdego dnia. Niezb\u0119dne s\u0105 ci\u0105g\u0142e badania i rozw\u00f3j w zakresie leczenia, terapii i urz\u0105dze\u0144 wspomagaj\u0105cych.<\/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

Gdybym jutro zosta\u0142 wyleczony, je\u017adzi\u0142bym na rolkach!<\/p>\n

 <\/p>\n

* Aby przeczyta\u0107 wi\u0119cej wywiad\u00f3w \"LGMD Spotlight Interviews\" lub zg\u0142osi\u0107 ch\u0119\u0107 udzia\u0142u w nadchodz\u0105cym wywiadzie, odwied\u017a nasz\u0105 stron\u0119 internetow\u0105 pod adresem: https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSpotlight Interview\u201d Name:\u00a0 Karen \u00a0Age: 54 Yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":1562,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,35],"tags":[83],"class_list":["post-1564","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2i","tag-lgmd2i-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Karen - 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\/2017\/09\/11\/karen-2\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Karen - 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