{"id":1529,"date":"2017-08-08T08:00:34","date_gmt":"2017-08-08T13:00:34","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1529"},"modified":"2017-08-08T08:00:34","modified_gmt":"2017-08-08T13:00:34","slug":"ben","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2017\/08\/08\/ben\/","title":{"rendered":"OSOBA Z LGMD: Ben"},"content":{"rendered":"<p><strong>LGMD \"WYWIAD W \u015aWIETLE REFLEKTOR\u00d3W\"<\/strong><\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p><strong>Nazwa<\/strong>:  Ben\u00a0 <strong>Wiek<\/strong>23 lata<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2017\/08\/LGMD2A-Chu-Ben.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1530 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\/2017\/08\/LGMD2A-Chu-Ben-300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>Kraj<\/strong>: Hongkong<\/p>\n<p><strong>Podtyp LGMD<\/strong>: LGMD2A \/ kalpainopatia<!--more--><\/p>\n<p>&nbsp;<\/p>\n<p><strong>W jakim wieku zosta\u0142e\u015b zdiagnozowany?<\/strong>:<\/p>\n<p>Zdiagnozowano mnie w wieku 21 lat.<\/p>\n<p><strong>Jakie by\u0142y pierwsze objawy?<\/strong>:<\/p>\n<p>Wyst\u0105pi\u0142y obustronne przykurcze sznur\u00f3w pi\u0119towych, kt\u00f3re spowodowa\u0142y chodzenie na palcach.<\/p>\n<p><strong>Czy masz innych cz\u0142onk\u00f3w rodziny cierpi\u0105cych na LGMD?<\/strong><\/p>\n<p>M\u00f3j brat wykazuje podobne objawy, ale nie zosta\u0142 jeszcze oficjalnie zdiagnozowany.<\/p>\n<p><strong>Co uwa\u017casz za najwi\u0119ksze wyzwanie w \u017cyciu z LGMD?<\/strong>:<\/p>\n<p>Obecnie najwi\u0119kszym wyzwaniem s\u0105 dla mnie trudno\u015bci z wchodzeniem po schodach i pokonywaniem d\u0142ugich dystans\u00f3w.<\/p>\n<p><strong>Jakie jest twoje najwi\u0119ksze osi\u0105gni\u0119cie?<\/strong>:<\/p>\n<p>Nie pozwoli\u0107, by choroba wp\u0142yn\u0119\u0142a na moje studia.<\/p>\n<p><strong>Jak LGMD wp\u0142yn\u0119\u0142o na to, \u017ce sta\u0142e\u015b si\u0119 osob\u0105, kt\u00f3r\u0105 jeste\u015b dzisiaj:<\/strong><\/p>\n<p>Choroba LGMD uczyni\u0142a mnie silniejsz\u0105, z siln\u0105 wol\u0105 i wytrwa\u0142o\u015bci\u0105.<\/p>\n<p><strong>Co chcia\u0142by\u015b, aby \u015bwiat dowiedzia\u0142 si\u0119 o LGMD?<\/strong>:<\/p>\n<p>Chc\u0119, aby \u015bwiat dowiedzia\u0142 si\u0119, \u017ce LGMD mo\u017ce dotkn\u0105\u0107 ludzi w ka\u017cdym wieku - dzieci, nastolatk\u00f3w, m\u0142odych doros\u0142ych i doros\u0142ych.  Wa\u017cne jest, aby wi\u0119cej os\u00f3b dowiedzia\u0142o si\u0119 o LGMD.<\/p>\n<p><strong>Gdyby jutro mo\u017cna by\u0142o \"wyleczy\u0107\" chorob\u0119 LGMD, co by\u0142oby pierwsz\u0105 rzecz\u0105, kt\u00f3r\u0105 chcia\u0142by\u015b zrobi\u0107?<\/strong>:<\/p>\n<p>Gdyby moje LGMD mog\u0142o zosta\u0107 wyleczone jutro, pierwsz\u0105 rzecz\u0105, kt\u00f3r\u0105 chcia\u0142bym zrobi\u0107, to zaanga\u017cowa\u0107 si\u0119 w jak\u0105\u015b aktywno\u015b\u0107 sportow\u0105, poniewa\u017c LGMD obecnie uniemo\u017cliwia mi udzia\u0142 w zaj\u0119ciach.<\/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>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSPOTLIGHT INTERVIEW\u201d \u00a0 Name:\u00a0 Ben\u00a0 Age:\u00a0 23 yrs. old [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1530,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[79],"class_list":["post-1529","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a-hong-kong"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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