{"id":1293,"date":"2016-08-17T12:31:33","date_gmt":"2016-08-17T17:31:33","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1293"},"modified":"2016-08-17T12:31:33","modified_gmt":"2016-08-17T17:31:33","slug":"melanie","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2016\/08\/17\/melanie\/","title":{"rendered":"OSOBA Z LGMD: Melanie"},"content":{"rendered":"

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

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NAZWA<\/strong>: Melanie \u00a0 WIEK<\/strong>: 33\"LGMD2B<\/a><\/div>\n<\/div>\n
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KRAJ:<\/strong> USA<\/span><\/span><\/div>\n<\/div>\n
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Podtyp LGMD<\/strong>: LGMD2b (dysferlinopatia\/miopatia Miyoshi) <\/span><\/span><\/div>\n<\/div>\n
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\u00a0<\/span><\/strong><\/div>\n<\/div>\n
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W JAKIM WIEKU ZOSTA\u0141E\u015a ZDIAGNOZOWANY?<\/strong><\/div>\n<\/div>\n
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Zdiagnozowano mnie tydzie\u0144 przed moimi 29 urodzinami.<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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JAKIE BY\u0141Y PIERWSZE OBJAWY: <\/span><\/span><\/strong><\/div>\n<\/div>\n
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Nie mog\u0142em podnie\u015b\u0107 si\u0119 na palcach, mia\u0142em palce m\u0142otkowate (deformacja stopy) i ca\u0142y czas odczuwa\u0142em b\u00f3l i zm\u0119czenie.<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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CZY MASZ INNYCH CZ\u0141ONK\u00d3W RODZINY, KT\u00d3RZY CHORUJ\u0104 NA LGMD?<\/strong> <\/span><\/span><\/div>\n<\/div>\n
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Nie, ani jednego!<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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CO UWA\u017bASZ ZA NAJWI\u0118KSZE WYZWANIE W \u017bYCIU Z LGMD? <\/span><\/span><\/strong><\/div>\n<\/div>\n
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Utrata zdolno\u015bci do wykonywania codziennych zada\u0144 i aktywno\u015bci sprawi\u0142a, \u017ce \u017cycie sta\u0142o si\u0119 sporym wyzwaniem. Musisz planowa\u0107 z wyprzedzeniem ka\u017cd\u0105 drobnostk\u0119. Utrudnia to r\u00f3wnie\u017c fakt, \u017ce ludzie nie rozumiej\u0105 tego faktu. Kiedy nie wygl\u0105dasz na chorego, ludzie nie traktuj\u0105 Twoich potrzeb powa\u017cnie.<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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JAKIE JEST TWOJE NAJWI\u0118KSZE OSI\u0104GNI\u0118CIE? <\/span><\/span><\/strong><\/div>\n<\/div>\n
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Zdobycie tytu\u0142u magistra i zapewnienie sobie \u015bwietnej pracy w rz\u0105dzie federalnym (podczas gdy codziennie jestem chory).<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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JAK CHOROBA ALZHEIMERA WP\u0141YN\u0118\u0141A NA TO, \u017bE STA\u0141E\u015a SI\u0118 OSOB\u0104, KT\u00d3R\u0104 JESTE\u015a DZISIAJ: <\/span><\/span><\/strong><\/div>\n<\/div>\n
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Po pierwszej diagnozie czu\u0142am si\u0119 bezradna i samotna. Nie zna\u0142am ani jednej osoby z t\u0105 form\u0105 MD i by\u0142am przera\u017cona. Zamiast si\u0119 d\u0105sa\u0107 lub pozwoli\u0107, by mnie to przygn\u0119bi\u0142o, pomy\u015bla\u0142em: \"Dlaczego nie wyj\u015b\u0107 i czego\u015b z tym zrobi\u0107?\". Zacz\u0105\u0142em wi\u0119c przygl\u0105da\u0107 si\u0119 MDA i sposobom zbierania funduszy. Za\u0142o\u017cy\u0142em MDA Muscle Walk Team i od tamtej pory robi\u0119 to co roku. Wtedy zdecydowa\u0142em, \u017ce zrobi\u0119 wszystko, co w mojej mocy, p\u00f3ki jeszcze mog\u0119 (poniewa\u017c trac\u0119 zdolno\u015b\u0107 chodzenia). I tak zrobi\u0142em. Podr\u00f3\u017cowa\u0142em wsz\u0119dzie i do niekt\u00f3rych miejsc samotnie. Uda\u0142o mi si\u0119 nawet zanurkowa\u0107. Wierz\u0119, \u017ce ta diagnoza uczyni\u0142a mnie jeszcze bardziej pozytywn\u0105 osob\u0105. Z pewno\u015bci\u0105 uczyni\u0142a mnie jeszcze silniejsz\u0105 osob\u0105. Wiele do\u015bwiadcze\u0144, kt\u00f3rych do\u015bwiadczy\u0142em w ci\u0105gu ostatnich 4 lat, jest bezpo\u015brednim wynikiem tego, \u017ce trzyma\u0142em si\u0119 LGMD i udowodni\u0142em, \u017ce szanse s\u0105 z\u0142e.<\/div>\n<\/div>\n
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\u00a0<\/span><\/strong><\/div>\n<\/div>\n
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CO \u015aWIAT POWINIEN WIEDZIE\u0106 O LGMD?<\/span><\/span><\/strong><\/div>\n<\/div>\n
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Po pierwsze, choroba nas nie definiuje. Jeste\u015bmy tym, kim jeste\u015bmy, a tylko tak si\u0119 sk\u0142ada, \u017ce cierpimy na t\u0119 okropn\u0105 chorob\u0119. Po drugie, to, \u017ce wygl\u0105damy dobrze, nie oznacza, \u017ce czujemy si\u0119 dobrze. Po trzecie, dystrofia mi\u0119\u015bniowa to nie stwardnienie rozsiane.<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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GDYBY JUTRO MO\u017bNA BY\u0141O \"WYLECZY\u0106\" CHOROB\u0118 ALZHEIMERA, CO BY\u0141OBY PIERWSZ\u0104 RZECZ\u0104, KT\u00d3R\u0104 BY\u015a ZROBI\u0141.<\/span><\/span><\/strong><\/div>\n<\/div>\n
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Ta\u0144czy\u0107 jak kiedy\u015b! Nast\u0119pnie w\u0119drowa\u0107 po wszystkich parkach narodowych i robi\u0107 mn\u00f3stwo niesamowitych zdj\u0119\u0107. Nast\u0119pnie przebiec maraton lub wzi\u0105\u0107 udzia\u0142 w wy\u015bcigu z przeszkodami.<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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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. <\/span><\/span><\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSpotlight Interview\u201d NAME: Melanie \u00a0 AGE: 33 COUNTRY: USA […]<\/p>","protected":false},"author":1,"featured_media":1295,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[21,23,55,16],"class_list":["post-1293","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-dysferlinopathy","tag-lgmd2b","tag-miyoshi-myopathy","tag-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Melanie - 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\/2016\/08\/17\/melanie\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Melanie - 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