{"id":967,"date":"2015-07-29T10:25:33","date_gmt":"2015-07-29T15:25:33","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=967"},"modified":"2015-07-29T10:25:33","modified_gmt":"2015-07-29T15:25:33","slug":"patricia","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2015\/07\/29\/patricia\/","title":{"rendered":"OSOBA Z LGMD: Patricia"},"content":{"rendered":"

07\/29\/2015:<\/strong><\/p>\n

NAZWA<\/strong>: Patrycja \u00a0WIEK<\/strong>26 lat\"LGMD2A<\/a><\/p>\n

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

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

 <\/p>\n

W JAKIM WIEKU ZOSTA\u0141E\u015a ZDIAGNOZOWANY?<\/strong>:<\/p>\n

Zdiagnozowano u mnie stwardnienie rozsiane, gdy mia\u0142em 12 lat.<\/p>\n

JAKIE BY\u0141Y PIERWSZE OBJAWY<\/strong>:<\/p>\n

Pierwszymi objawami by\u0142o chodzenie na palcach, ramiona nie wyprostowane, kulej\u0105cy ch\u00f3d i brak przybierania na wadze.<\/p>\n

CZY MASZ INNYCH CZ\u0141ONK\u00d3W RODZINY, KT\u00d3RZY CHORUJ\u0104 NA LGMD? <\/strong><\/p>\n

Nikt w mojej rodzinie nie choruje na dystrofi\u0119 mi\u0119\u015bniow\u0105 ani LGMD.<\/p>\n

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

Najwi\u0119kszym wyzwaniem jest niemo\u017cno\u015b\u0107 wykonywania pewnych czynno\u015bci, takich jak chodzenie, bieganie, samodzielne wstawanie z \u0142\u00f3\u017cka, samodzielna k\u0105piel, gotowanie obiadu, zabawa z siostrze\u0144cem na pod\u0142odze. Wszystko, co robi\u0119, jest wyzwaniem.<\/p>\n

JAKIE JEST TWOJE NAJWI\u0118KSZE OSI\u0104GNI\u0118CIE?<\/strong>:<\/p>\n

Najwi\u0119kszym osi\u0105gni\u0119ciem by\u0142oby wyj\u015bcie za m\u0105\u017c za wspania\u0142ego m\u0119\u017cczyzn\u0119 i mam nadziej\u0119, \u017ce wkr\u00f3tce za\u0142o\u017cymy rodzin\u0119, a tak\u017ce kiedy dosta\u0142am w\u00f3zek inwalidzki i by\u0142am w stanie ugotowa\u0107 obiad po raz pierwszy od 2 lat i m\u00f3c wyj\u015b\u0107 z m\u0119\u017cem na zewn\u0105trz.<\/p>\n

JAK CHOROBA ALZHEIMERA WP\u0141YN\u0118\u0141A NA TO, \u017bE STA\u0141E\u015a SI\u0118 OSOB\u0104, KT\u00d3R\u0104 JESTE\u015a DZISIAJ: <\/strong><\/p>\n

U\u015bwiadomi\u0142o mi to, \u017ce nawet je\u015bli jestem ograniczony w zakresie rzeczy, kt\u00f3re mog\u0119 zrobi\u0107, z odpowiednimi narz\u0119dziami nadal mog\u0119 robi\u0107 niekt\u00f3re z tych rzeczy, tylko w inny spos\u00f3b.<\/p>\n

CO CHCIA\u0141BY\u015a, ABY \u015aWIAT DOWIEDZIA\u0141 SI\u0118 O LGMD?<\/strong>:<\/p>\n

Zdob\u0105d\u017a wiedz\u0119 na temat LGMD i niekt\u00f3rych zmaga\u0144, przez kt\u00f3re przechodz\u0105 ludzie. Nie oceniaj kogo\u015b na podstawie jego wygl\u0105du. Ka\u017cda forma MD ma inny wygl\u0105d, ale to nie czyni osoby. Osobowo\u015b\u0107 czyni osob\u0119. Je\u015bli widzisz, \u017ce kto\u015b zmaga si\u0119 z chorob\u0105, czy to na w\u00f3zku inwalidzkim, czy chodz\u0105c, zaoferuj pomoc, wiem, \u017ce kiedy kto\u015b pyta, czy mo\u017ce mi pom\u00f3c, jestem za to bardzo wdzi\u0119czny.<\/p>\n

GDYBY JUTRO MO\u017bNA BY\u0141O \"WYLECZY\u0106\" CHOROB\u0118 ALZHEIMERA, CO BY\u0141OBY PIERWSZ\u0104 RZECZ\u0104, KT\u00d3R\u0104 CHCIA\u0141BY\u015a ZROBI\u0106?<\/strong>:<\/p>\n

Biega\u0142bym tak szybko, jak tylko potrafi\u0119, po ulicy i wok\u00f3\u0142 bloku, skaka\u0142bym w g\u00f3r\u0119 i w d\u00f3\u0142, a mo\u017ce nawet robi\u0142bym salta. Marz\u0119 o dniu, w kt\u00f3rym b\u0119d\u0119 m\u00f3g\u0142 to robi\u0107.<\/p>","protected":false},"excerpt":{"rendered":"

07\/29\/2015: NAME: Patricia \u00a0AGE:\u00a0 26 yrs old COUNTRY: United States […]<\/p>","protected":false},"author":1,"featured_media":968,"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-967","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 - Patricia<\/title>\n<meta name=\"description\" content=\"Patricia 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\/07\/29\/patricia\/\" \/>\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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