{"id":1400,"date":"2016-12-06T13:46:17","date_gmt":"2016-12-06T19:46:17","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1400"},"modified":"2016-12-06T13:46:17","modified_gmt":"2016-12-06T19:46:17","slug":"adriana","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2016\/12\/06\/adriana\/","title":{"rendered":"INDYWIDUALNA OSOBA Z LGMD: Adriana"},"content":{"rendered":"<p>LGMD \"Wywiad w centrum uwagi\"<\/p>\n<p><strong>Imi\u0119 i nazwisko:<\/strong>\u00a0 \u00a0\u00a0Adriana\u00a0\u00a0\u00a0 <strong>Wiek<\/strong>:  48 lat<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2016\/12\/LGMD2B-Adriana.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1399 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\/2016\/12\/LGMD2B-Adriana-300x169.png\" alt=\"lgmd2b-adriana\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>Kraj<\/strong>:   Argentyna<\/p>\n<p><strong>Podtyp LGMD<\/strong>:  LGMD2B<\/p>\n<p>&nbsp;<\/p>\n<p>W<strong>H<\/strong><strong>A<\/strong><strong>W JAKIM WIEKU ZOSTA\u0141E\u015a(-A\u015a) ZDIAGNOZOWANY(-A)<\/strong>:<\/p>\n<p>Zdiagnozowano mnie w wieku 20 lat.<\/p>\n<p><strong>W<\/strong><strong>JAKIE BY\u0141Y PIERWSZE OBJAWY<\/strong>:<\/p>\n<p>Moje pierwsze objawy obejmowa\u0142y: trudno\u015bci z wchodzeniem po schodach, zm\u0119czenie i kilka upadk\u00f3w.<\/p>\n<p><strong>CZY MASZ INNYCH CZ\u0141ONK\u00d3W RODZINY, KT\u00d3RZY CHORUJ\u0104 NA LGMD?\u00a0\u00a0 <\/strong><\/p>\n<p>Tak, m\u00f3j brat r\u00f3wnie\u017c cierpi na LGMD.<\/p>\n<p><strong>W<\/strong><strong>CO UWA\u017bASZ ZA NAJWI\u0118KSZE WYZWANIE W \u017bYCIU Z LGMD?<\/strong>:<\/p>\n<p>Na pocz\u0105tku najwi\u0119kszym wyzwaniem by\u0142 proces akceptacji choroby. Bior\u0105c pod uwag\u0119, \u017ce jestem bardzo niezale\u017cn\u0105 osob\u0105 o bardzo aktywnym \u017cyciu, dzi\u015b moim najwi\u0119kszym wyzwaniem jest pogodzenie moich pragnie\u0144 z tym, co jest mo\u017cliwe, i znalezienie strategii, kt\u00f3re pozwol\u0105 mi osi\u0105gn\u0105\u0107 moje cele, zrozumie\u0107 moje ograniczenia i znale\u017a\u0107 rozwi\u0105zania.<\/p>\n<p><strong>W<\/strong><strong>JAKIE JEST TWOJE NAJWI\u0118KSZE OSI\u0104GNI\u0118CIE?<\/strong>:<\/p>\n<p>Bycie w stanie pokona\u0107 przeszkody, przed kt\u00f3rymi sta\u0142am, bycie matk\u0105, bycie otoczon\u0105 przez moich bliskich i codzienna praca w czym\u015b, co lubi\u0119.  Praca w organizacji pozarz\u0105dowej zajmuj\u0105cej si\u0119 chorobami nerwowo-mi\u0119\u015bniowymi, ADM Argentina, kt\u00f3rej by\u0142am prezesem w 2011 i 2016 roku.<\/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>Musia\u0142em przedefiniowa\u0107 moje prognozy dotycz\u0105ce przysz\u0142o\u015bci i tego, w jakich dziedzinach chc\u0119 pracowa\u0107, to by\u0142o du\u017ce wyzwanie. Ale by\u0142o to mo\u017cliwe, by\u0142em w stanie rozwija\u0107 si\u0119 jako osoba, \u017cy\u0107 moim codziennym \u017cyciem z wi\u0119kszym zainteresowaniem, docenia\u0107 to, co \u017cycie mi zaoferowa\u0142o i stara\u0107 si\u0119 pomaga\u0107 innym, kt\u00f3rzy przechodz\u0105 przez podobne sytuacje.<\/p>\n<p><strong>W<\/strong><strong>CO \u015aWIAT POWINIEN WIEDZIE\u0106 O LGMD?<\/strong>:<\/p>\n<p>Chcia\u0142abym, aby ca\u0142y \u015bwiat dowiedzia\u0142 si\u0119 o istnieniu LGMD, mo\u017cliwo\u015bciach jej leczenia, a przede wszystkim walczy\u0142 o jej wczesne wykrycie, aby poprawi\u0107 jako\u015b\u0107 naszego \u017cycia.  Wspiera\u0107 diagnostyk\u0119 i badania.<\/p>\n<p><strong>I<\/strong><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>Poszed\u0142bym na \u0142y\u017cwy ponownie.<\/p>\n<p>&nbsp;<\/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>\n<p>&nbsp;<\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSpotlight Interview\u201d Name:\u00a0 \u00a0\u00a0Adriana\u00a0\u00a0\u00a0 Age: \u00a048 years old Country: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1399,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[69],"class_list":["post-1400","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2b-argentina"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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