{"id":2231,"date":"2018-09-07T08:45:25","date_gmt":"2018-09-07T13:45:25","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2231"},"modified":"2018-09-07T08:45:25","modified_gmt":"2018-09-07T13:45:25","slug":"mackenzie","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2018\/09\/07\/mackenzie\/","title":{"rendered":"OSOBA Z LGMD: Mackenzie"},"content":{"rendered":"<p>LGMD \"Wywiad w centrum uwagi\"<\/p>\n<p><strong>NAZWA:<\/strong> Mackenzie<strong> \u00a0\u00a0WIEK<\/strong>22 lata<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2018\/09\/Unknown-Mackenzie.jpg\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-2232 alignright\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27300%27%20height%3D%27169%27%20viewBox%3D%270%200%20300%20169%27%3E%3Crect%20width%3D%27300%27%20height%3D%27169%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2018\/09\/Unknown-Mackenzie-300x169.jpg\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>Kraj<\/strong><strong>:<\/strong> USA<\/p>\n<p><strong>Podtyp LGMD:<\/strong> Nieznany<\/p>\n<p><strong>W JAKIM WIEKU ZOSTA\u0141E\u015a ZDIAGNOZOWANY? <\/strong><\/p>\n<p>Zdiagnozowano mnie w zesz\u0142ym roku w wieku 21 lat.<\/p>\n<p><strong>JAKIE BY\u0141Y PIERWSZE OBJAWY:<\/strong><\/p>\n<p>Moje pierwsze objawy obejmowa\u0142y b\u00f3l st\u00f3p i n\u00f3g, \u015blizganie si\u0119 st\u00f3p podczas chodzenia, zm\u0119czenie i trudno\u015bci z podnoszeniem przedmiot\u00f3w, kt\u00f3re powinny by\u0107 \u0142atwe do podniesienia dla osoby w moim wieku\/wysokiej.<\/p>\n<p><strong>CZY MASZ INNYCH CZ\u0141ONK\u00d3W RODZINY, KT\u00d3RZY CHORUJ\u0104 NA LGMD?<\/strong><\/p>\n<p>Nie, jestem jedyny.<\/p>\n<p><strong>CO JEST DLA CIEBIE NAJWI\u0118KSZYM WYZWANIEM W \u017bYCIU Z LGMD? <\/strong><\/p>\n<p>Najprostsze czynno\u015bci sprawiaj\u0105, \u017ce boli mnie cia\u0142o (sprz\u0105tanie, przymierzanie ubra\u0144, zakupy itp.). Ci\u0105g\u0142e zm\u0119czenie to zawsze walka. Ucz\u0119 si\u0119 ustala\u0107 priorytety moich codziennych czynno\u015bci i akceptowa\u0107 fakt, \u017ce nie zawsze mog\u0119 robi\u0107 to, na co mam ochot\u0119.<\/p>\n<p><strong>JAKIE JEST TWOJE NAJWI\u0118KSZE OSI\u0104GNI\u0118CIE?<\/strong>:<\/p>\n<p>Ko\u0144cz\u0119 studia, aby zosta\u0107 nauczycielem edukacji podstawowej\/specjalnej.<\/p>\n<p><strong>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<p>Moja diagnoza zosta\u0142a postawiona nieca\u0142y rok temu, ale zauwa\u017cy\u0142am, \u017ce osi\u0105ganie moich cel\u00f3w jest dla mnie wa\u017cniejsze. W tym roku r\u00f3wnie\u017c si\u0119 zar\u0119czy\u0142am i jestem taka szcz\u0119\u015bliwa, \u017ce byli\u015bmy razem przed diagnoz\u0105, a on mimo to poprosi\u0142 mnie o r\u0119k\u0119! Wci\u0105\u017c mam cele.<\/p>\n<p><strong>CO \u015aWIAT POWINIEN WIEDZIE\u0106 O LGMD? <\/strong><\/p>\n<p>Chc\u0119, aby \u015bwiat wiedzia\u0142, \u017ce nie jeste\u015bmy leniwi. Chcieliby\u015bmy by\u0107 bardziej aktywni. Ka\u017cdego dnia my\u015blimy o tym, co chcieliby\u015bmy zrobi\u0107, ale nie mamy na to energii lub tolerancji na b\u00f3l. Chc\u0119, aby \u015bwiat wiedzia\u0142, \u017ce jeste\u015bmy lud\u017ami z nadziejami i marzeniami, tak jak oni.<\/p>\n<p><strong>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<p>Gdyby choroba LGMD zosta\u0142a wyleczona jutro, chcia\u0142bym \u017cy\u0107 bez b\u00f3lu i mie\u0107 energi\u0119, jak\u0105 powinien mie\u0107 22-latek!<\/p>\n<p>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: <a href=\"https:\/\/www.lgmd-info.org\/pl\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSpotlight Interview\u201d NAME: Mackenzie \u00a0\u00a0AGE: 22 yrs. old Country: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":2232,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13],"tags":[99],"class_list":["post-2231","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","tag-united-states-sub-type-unknown"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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