{"id":615,"date":"2015-04-29T08:06:42","date_gmt":"2015-04-29T13:06:42","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=615"},"modified":"2015-04-29T08:06:42","modified_gmt":"2015-04-29T13:06:42","slug":"alicia","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2015\/04\/29\/alicia\/","title":{"rendered":"OSOBA Z LGMD: Alicja"},"content":{"rendered":"

04\/29\/2015<\/p>\n

Imi\u0119 i nazwisko:<\/strong>\u00a0 Alicja<\/p>\n

Wiek<\/strong>: 38 lat\"LGMD2A<\/a><\/p>\n

Kraj<\/strong>: Stany Zjednoczone<\/p>\n

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

 <\/p>\n

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

Zosta\u0142em zdiagnozowany w wieku 35 lat po wielu latach b\u0142\u0119dnych diagnoz.<\/p>\n

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

Chodzenie i bieganie na palcach oraz wchodzenie po schodach by\u0142y pierwszymi objawami.<\/p>\n

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

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

Jednym z najwi\u0119kszych wyzwa\u0144 dla mnie by\u0142o znalezienie lekarzy, kt\u00f3rzy s\u0105 wykszta\u0142ceni, je\u015bli chodzi o LGMD oraz wyzwania i objawy, kt\u00f3re towarzysz\u0105 tej chorobie. Wielu lekarzy nie traktowa\u0142o moich problem\u00f3w powa\u017cnie (b\u00f3le mi\u0119\u015bni, utrata si\u0142y, problemy z chodzeniem po schodach) lub uwa\u017ca\u0142o, \u017ce cierpi\u0119 na chorob\u0119 autoimmunologiczn\u0105, zanim znalaz\u0142em lekarza, kt\u00f3ry w ko\u0144cu wys\u0142a\u0142 mnie do Mayo Clinic. Po EMG, badaniach krwi i biopsji mi\u0119\u015bni w ko\u0144cu zosta\u0142em zdiagnozowany, ale zaj\u0119\u0142o to wiele lat i wielu lekarzy, aby dotrze\u0107 do miejsca, w kt\u00f3rym jestem.<\/p>\n

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

Wychowanie dw\u00f3ch niesamowitych c\u00f3rek z moim m\u0119\u017cem od 14 lat by\u0142o osi\u0105gni\u0119ciem i b\u0142ogos\u0142awie\u0144stwem. Uczenie ich \u017cyczliwo\u015bci i wi\u0119kszej empatii wobec ludzi, poniewa\u017c nigdy tak naprawd\u0119 nie znamy zmaga\u0144 tych, kt\u00f3rzy s\u0105 wok\u00f3\u0142 nas.<\/p>\n

Jak LGMD wp\u0142yn\u0119\u0142o na to, \u017ce sta\u0142e\u015b si\u0119 osob\u0105, kt\u00f3r\u0105 jeste\u015b dzisiaj: \u00a0<\/strong><\/p>\n

Nauczy\u0142 mnie by\u0107 milszym, wi\u0119cej s\u0142ucha\u0107 i \u015bmia\u0107 si\u0119 ka\u017cdego dnia. Czasami jedyne, co mo\u017cna zrobi\u0107, to \u015bmia\u0107 si\u0119.<\/p>\n

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

Je\u015bli masz cz\u0142onka rodziny lub nawet przyjaciela, u kt\u00f3rego zdiagnozowano LGMD, dowiedz si\u0119 wi\u0119cej o tej chorobie. Mo\u017ce to dla kogo\u015b wiele znaczy\u0107.<\/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

Przeta\u0144czy\u0107 ca\u0142\u0105 noc!<\/p>","protected":false},"excerpt":{"rendered":"

04\/29\/2015 Name:\u00a0 Alicia Age:\u00a0 38 yrs. old Country: United States […]<\/p>","protected":false},"author":1,"featured_media":616,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,16],"class_list":["post-615","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","tag-united-states"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Alicia<\/title>\n<meta name=\"description\" content=\"Alicia, who is 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\/04\/29\/alicia\/\" \/>\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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