{"id":1047,"date":"2015-11-06T10:43:55","date_gmt":"2015-11-06T16:43:55","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1047"},"modified":"2015-11-06T10:43:55","modified_gmt":"2015-11-06T16:43:55","slug":"siri","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2015\/11\/06\/siri\/","title":{"rendered":"OSOBA Z LGMD: Siri"},"content":{"rendered":"

11\/06\/2015<\/strong><\/p>\n

NAZWA<\/strong>: Siri\u00a0 WIEK<\/strong>28 lat<\/p>\n

KRAJ<\/strong>: Norwegia<\/p>\n

Podtyp LGMD<\/strong>: LGMD2A \/ kalpainopatia\"LGMD2A<\/a><\/p>\n

 <\/p>\n

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

Zdiagnozowano mnie, gdy mia\u0142em 26 lat.<\/p>\n

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

Zacz\u0105\u0142em odczuwa\u0107 niewyja\u015bnione zm\u0119czenie w wieku 16 lat. Kiedy mia\u0142em 19 lat, zauwa\u017cy\u0142em, \u017ce mam problemy z postawieniem<\/p>\n

prawe rami\u0119 nad g\u0142ow\u0105. We wczesnych latach 20-tych moje sznurowad\u0142a pi\u0119towe zacz\u0119\u0142y mnie denerwowa\u0107, poniewa\u017c by\u0142y bardzo ciasne. Kilka lat<\/p>\n

P\u00f3\u017aniej zacz\u0105\u0142em zmaga\u0107 si\u0119 ze schodami i niskimi siedzeniami i nie mog\u0142em ju\u017c biega\u0107 ani skaka\u0107.<\/p>\n

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

Nie, jestem jedynym cz\u0142onkiem rodziny z LGMD2A.<\/p>\n

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

Codzienne czynno\u015bci, kt\u00f3re ludzie bior\u0105 za pewnik, sprawiaj\u0105, \u017ce czasami jestem naprawd\u0119 sfrustrowany. Jak wydostanie si\u0119 z<\/p>\n

Krzes\u0142o, obracanie si\u0119 w \u0142\u00f3\u017cku czy wi\u0105zanie but\u00f3w - wszystkie te ma\u0142e rzeczy sprawiaj\u0105, \u017ce jestem zm\u0119czony i nie lubi\u0119 marnowa\u0107 czasu.<\/p>\n

energii. Ale prawdziw\u0105 walk\u0105 jest ca\u0142a dodatkowa praca zwi\u0105zana z niepe\u0142nosprawno\u015bci\u0105. Ludzie nie dostrzegaj\u0105 wszystkich<\/p>\n

Godziny, kt\u00f3re sp\u0119dzam na za\u0142atwianiu formalno\u015bci, zdobywaniu potrzebnych rzeczy i ustalaniu moich praw, fizjoterapii, wizyt lekarskich i tak dalej, lub ca\u0142y czas, kt\u00f3ry \"marnuj\u0119\" na odpoczynek, poniewa\u017c jednego dnia przesadzi\u0142em. Wyzwaniem jest r\u00f3wnie\u017c bycie zale\u017cnym od innych ludzi.<\/p>\n

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

Uko\u0144czy\u0142em 6 lat studi\u00f3w i uzyska\u0142em dyplom nauczyciela. Odwiedzi\u0142em r\u00f3wnie\u017c wiele r\u00f3\u017cnych<\/p>\n

kraje i w\u0119drowa\u0142em po r\u00f3\u017cnych g\u00f3rach pomimo moich zmaga\u0144.<\/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

Nauczy\u0142o mnie to nie bra\u0107 niczego za pewnik. Sprawi\u0142o, \u017ce sta\u0142em si\u0119 bardziej pokorny i wdzi\u0119czny za wszystkie ma\u0142e rzeczy w \u017cyciu. Nauczy\u0142o mnie zwalnia\u0107 i by\u0107 bardziej cierpliwym, a tak\u017ce mie\u0107 odwag\u0119 prosi\u0107 o pomoc w drobnych zadaniach. I cieszy\u0107 si\u0119 ka\u017cdym dniem! Sprawi\u0142 te\u017c, \u017ce jestem bardziej kreatywna, poniewa\u017c musz\u0119 znajdowa\u0107 nowe sposoby na robienie rzeczy. I pozna\u0142am tylu nowych przyjaci\u00f3\u0142! Uwielbiam to.<\/p>\n

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

To, \u017ce faktycznie istnieje, to dobry pocz\u0105tek! I \u017ce wp\u0142ywa na ludzi na r\u00f3\u017cne sposoby, ale dla wi\u0119kszo\u015bci z nas jest to<\/p>\n

Bardzo frustruj\u0105ce \/ przygn\u0119biaj\u0105ce jest tracenie umiej\u0119tno\u015bci w miar\u0119 up\u0142ywu czasu. Zawsze mamy z tym do czynienia, poniewa\u017c jest to<\/p>\n

post\u0119puj\u0105ca choroba. To ci\u0105g\u0142y smutek. I \u017ce dotyka r\u00f3wnie\u017c naszych bliskich. B\u0105d\u017a zawsze \u017cyczliwy.<\/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

Bieg\u0142bym! I skaka\u0107 wsz\u0119dzie. I ta\u0144czy\u0142abym ca\u0142\u0105 noc! I pomaga\u0142abym moim przyjacio\u0142om si\u0119 rusza\u0107 czy co\u015b, haha \ud83d\ude09<\/p>\n

 <\/p>\n

Aby przeczyta\u0107 wi\u0119cej wywiad\u00f3w \"LGMD Spotlight Interviews\" lub zg\u0142osi\u0107 si\u0119 do udzia\u0142u w nadchodz\u0105cym wywiadzie, odwied\u017a nasz\u0105 stron\u0119 internetow\u0105: https:\/\/www.lgmd-info.org\/spotlight-interviews.<\/p>\n

 <\/p>","protected":false},"excerpt":{"rendered":"

11\/06\/2015 NAME:\u00a0 Siri\u00a0 AGE: \u00a028 yrs. old COUNTRY: \u00a0Norway LGMD […]<\/p>","protected":false},"author":1,"featured_media":1048,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,45],"class_list":["post-1047","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","tag-norway"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Siri<\/title>\n<meta name=\"description\" content=\"Siri, diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares her experience in living with this progressive neuro-muscular disease.\" \/>\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\/2015\/11\/06\/siri\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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