{"id":1692,"date":"2018-02-13T09:31:28","date_gmt":"2018-02-13T15:31:28","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1692"},"modified":"2018-02-13T09:31:28","modified_gmt":"2018-02-13T15:31:28","slug":"younis","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2018\/02\/13\/younis\/","title":{"rendered":"OSOBA Z LGMD: Younis"},"content":{"rendered":"<p><span style=\"color: #000000;\"><strong>NAZWA<\/strong>:  Younis\u00a0 <strong>WIEK<\/strong>:  14 lat<\/span><br \/>\n<span style=\"color: #000000;\"> <strong>KRAJ<\/strong>:  Syria<\/span><br \/>\n<span style=\"color: #000000;\"> <strong>PODTYP LGMD<\/strong>:  LGMD 2C<a style=\"color: #000000;\" href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2018\/02\/LGMD2C-Younis.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1690 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\/02\/LGMD2C-Younis-300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/span><!--more--><\/p>\n<p><span style=\"color: #000000;\"><strong>W jakim wieku zosta\u0142e\u015b zdiagnozowany?<\/strong><strong>:<\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\">Zdiagnozowano mnie w wieku 7 lat.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Jakie by\u0142y pierwsze objawy:<\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\">Objawy zacz\u0119\u0142y si\u0119 pojawia\u0107, gdy mia\u0142em 5 lat.  Jako ma\u0142e dziecko chodzi\u0142em na palcach.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Czy masz innych cz\u0142onk\u00f3w rodziny cierpi\u0105cych na LGMD?<\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\">Tak, u mojego starszego brata i dw\u00f3ch moich wujk\u00f3w (braci mojej matki) r\u00f3wnie\u017c zdiagnozowano LGMD2C.  (M\u00f3j najstarszy brat wyemigrowa\u0142 do Niemiec).<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Co uwa\u017casz za najwi\u0119ksze wyzwanie w \u017cyciu z LGMD?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">Dla mnie obecnie najwi\u0119kszymi wyzwaniami s\u0105 bieganie, wchodzenie po schodach i samodzielne doj\u015bcie do \u0142azienki.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Jakie jest twoje najwi\u0119ksze osi\u0105gni\u0119cie?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">Nie wiem, co jest moim najwi\u0119kszym osi\u0105gni\u0119ciem, ale jestem dumny z tego, \u017ce wci\u0105\u017c mog\u0119 chodzi\u0107 i jestem w miar\u0119 niezale\u017cny.  Chocia\u017c jednym z najtrudniejszych wyzwa\u0144, jakie musia\u0142em pokona\u0107 w \u017cyciu, by\u0142o uko\u0144czenie studi\u00f3w pomimo \"okoliczno\u015bci wojny i wysiedle\u0144\" w Syrii.<\/span><\/p>\n<p><span style=\"color: #000000;\"><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><\/span><\/p>\n<p><span style=\"color: #000000;\">LGMD nauczy\u0142o mnie cierpliwo\u015bci.  Nauczy\u0142a mnie tak\u017ce wi\u0119kszej \u015bwiadomo\u015bci i otwarto\u015bci.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>CO \u015aWIAT POWINIEN WIEDZIE\u0106 O LGMD?<\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\">Chc\u0119, aby \u015bwiat dowiedzia\u0142 si\u0119 wi\u0119cej o tej chorobie i r\u00f3\u017cnych typach LGMD.  Ponadto chc\u0119, aby ludzie wiedzieli, \u017ce wi\u0119cej bada\u0144 koncentruj\u0105cych si\u0119 na LGMD ma kluczowe znaczenie dla znalezienia lekarstwa i leczenia tych chor\u00f3b. Mam nadziej\u0119, \u017ce naukowcy znajd\u0105 lekarstwo na t\u0119 chorob\u0119.  Chc\u0119 r\u00f3wnie\u017c, aby ludzie podj\u0119li kroki w celu zapobiegania tej chorobie.<\/span><\/p>\n<p><span style=\"color: #000000;\"><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><\/span><\/p>\n<p><span style=\"color: #000000;\">Gdyby LGMD zosta\u0142o wyleczone jutro, pierwsz\u0105 rzecz\u0105, kt\u00f3r\u0105 bym zrobi\u0142, by\u0142oby szybkie bieganie, a nast\u0119pnie gra w pi\u0142k\u0119 no\u017cn\u0105 z moimi przyjaci\u00f3\u0142mi.<\/span><\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"color: #000000;\">* * * Aby przeczyta\u0107 wi\u0119cej wywiad\u00f3w \"LGMD Spotlight Interviews\" lub zg\u0142osi\u0107 si\u0119 na ochotnika do udzia\u0142u w nadchodz\u0105cym wywiadzie, odwied\u017a nasz\u0105 stron\u0119 internetow\u0105 pod adresem<\/span> <a href=\"https:\/\/www.lgmd-info.org\/pl\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><u>\u00a0 <\/u><\/p>\n<p><span style=\"color: #000000;\">* * * Prosimy o LIKE, COMMENT i SHARE tego postu, aby pom\u00f3c zwi\u0119kszy\u0107 \u015bwiadomo\u015b\u0107 na temat LGMD!<\/span><\/p>","protected":false},"excerpt":{"rendered":"<p>NAME:\u00a0 Younis\u00a0 AGE:\u00a0 14 yrs. old COUNTRY:\u00a0 Syria LGMD SUB-TYPE:\u00a0 [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1690,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,75],"tags":[89],"class_list":["post-1692","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2c","tag-lgmd2c-syria"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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