{"id":2862,"date":"2019-10-01T20:27:15","date_gmt":"2019-10-02T01:27:15","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2862"},"modified":"2019-10-01T20:27:15","modified_gmt":"2019-10-02T01:27:15","slug":"william","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2019\/10\/01\/william\/","title":{"rendered":"Osoba z LGMD: William"},"content":{"rendered":"<figure class=\"wp-block-image\"><img decoding=\"async\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271024%27%20height%3D%27576%27%20viewBox%3D%270%200%201024%20576%27%3E%3Crect%20width%3D%271024%27%20height%3D%27576%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2019\/10\/LGMD1D-William-1024x576.png\" alt=\"\" class=\"lazyload wp-image-2860\"\/><\/figure>\n\n\n\n<p><strong>LGMD \"Wywiad w \u015bwietle reflektor\u00f3w\"<\/strong><\/p>\n\n\n\n<p><strong>Nazwa<\/strong>:  William&nbsp;\n<strong>Wiek<\/strong>:\n62 lata<\/p>\n\n\n\n<p><strong>Kraj<\/strong>: Stany Zjednoczone<\/p>\n\n\n\n<p><strong>Podtyp LGMD<\/strong>:   LGMD D1 zwi\u0105zane z DNAJB6 (dawniej LGMD typu 1D)<\/p>\n\n\n\n<p><strong>W jakim wieku zosta\u0142e\u015b zdiagnozowany?<\/strong>:<\/p>\n\n\n\n<p>Zosta\u0142em zdiagnozowany klinicznie w wieku 40 lat, a nast\u0119pnie 5 lat p\u00f3\u017aniej, w wieku 45 lat, otrzyma\u0142em genetyczne potwierdzenie mojej diagnozy LGMD 1D.<\/p>\n\n\n\n<p><strong>Jakie by\u0142y pierwsze objawy?<\/strong>:<\/p>\n\n\n\n<p>Jako dziecko by\u0142em powolny.  Oko\u0142o 45 roku \u017cycia mia\u0142em trudno\u015bci z bieganiem.<\/p>\n\n\n\n<p><strong>Czy masz innych cz\u0142onk\u00f3w rodziny cierpi\u0105cych na LGMD?<\/strong><\/p>\n\n\n\n<p>Tak, m\u00f3j brat, kt\u00f3ry ma 67 lat, ma LGMD1D, podobnie jak moja c\u00f3rka.\nc\u00f3rka.<\/p>\n\n\n\n<p><strong>Co uwa\u017casz za najwi\u0119ksze wyzwanie\nw \u017cyciu z LGMD<\/strong>:<\/p>\n\n\n\n<p>Najwi\u0119kszym wyzwaniem by\u0142o dla mnie dostosowanie si\u0119 do\ni konieczno\u015b\u0107 stopniowego zwalniania tempa.<\/p>\n\n\n\n<p><strong>Jakie jest twoje najwi\u0119ksze osi\u0105gni\u0119cie?<\/strong>:<\/p>\n\n\n\n<p>Moim najwi\u0119kszym osi\u0105gni\u0119ciem by\u0142o za\u0142o\u017cenie Fundacji LGMD-1D\nDNAJB6, kt\u00f3ra jest publiczn\u0105 fundacj\u0105 non-profit, kt\u00f3rej misj\u0105 jest\nutrzymywanie centralnej lokalizacji dla os\u00f3b, u kt\u00f3rych zdiagnozowano dystrofi\u0119 mi\u0119\u015bniow\u0105 typu 1D (LGMD1D).\ndystrofi\u0119 mi\u0119\u015bniow\u0105 typu 1D (LGMD1D), aby mog\u0142y si\u0119 spotyka\u0107, konsolidowa\u0107 istotne wiadomo\u015bci i uruchamia\u0107\nzbierania funduszy w celu przyspieszenia bada\u0144.&nbsp; <a href=\"https:\/\/lgmd1d.org\">https:\/\/lgmd1d.org<\/a>\n<\/p>\n\n\n\n<p>Za\u0142o\u017cy\u0142em r\u00f3wnie\u017c Rejestr Pacjent\u00f3w dla wszystkich pacjent\u00f3w, u kt\u00f3rych zdiagnozowano autosomaln\u0105 dominuj\u0105c\u0105 posta\u0107 LGMD.  (LGMD typu 1)<\/p>\n\n\n\n<p><strong>W jaki spos\u00f3b LGMD wp\u0142yn\u0119\u0142o na to, \u017ce sta\u0142e\u015b si\u0119\nosob\u0105, kt\u00f3r\u0105 jeste\u015b dzisiaj:<\/strong><\/p>\n\n\n\n<p>LGMD wp\u0142yn\u0119\u0142o na moje \u017cycie i na to, kim jestem dzisiaj.  Zwolnienie tempa pozwoli\u0142o mi doceni\u0107 to, co\nwok\u00f3\u0142 mnie, rodzin\u0119, przyjaci\u00f3\u0142 i wi\u0119zi.<\/p>\n\n\n\n<p><strong>Co chcia\u0142by\u015b, aby \u015bwiat dowiedzia\u0142 si\u0119 o LGMD?<\/strong>:<\/p>\n\n\n\n<p>Musimy nadal rozpowszechnia\u0107 informacje i \u0142\u0105czy\u0107 si\u0119 w spos\u00f3b, kt\u00f3ry pomo\u017ce w wyleczeniu.  Na przyk\u0142ad, autosomalny dominuj\u0105cy rejestr pacjent\u00f3w z LGMD (LGMD typu 1) b\u0119dzie mia\u0142 kluczowe znaczenie dla bada\u0144 i znalezienia lekarstwa.<\/p>\n\n\n\n<p><strong>Gdyby jutro mo\u017cna by\u0142o \"wyleczy\u0107\" chorob\u0119 LGMD, co\nby\u0142oby pierwsz\u0105 rzecz\u0105, kt\u00f3r\u0105 chcia\u0142by\u015b zrobi\u0107<\/strong>:<\/p>\n\n\n\n<p>Gdybym jutro wyzdrowia\u0142, poszed\u0142bym pota\u0144czy\u0107 i pogra\u0107 w pi\u0142k\u0119 z moimi wnuczkami!!!<\/p>\n\n\n\n<p> <\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSpotlight interview\u201d Name:&nbsp; William&nbsp; Age: 62 years old Country: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":2860,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,102,104],"tags":[103],"class_list":["post-2862","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd-d1-dnajb6-related","category-lgmd1d","tag-lgmd-d1-dnajb6-related-united-states-lgmd1d"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Individual with LGMD: William - 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\/2019\/10\/01\/william\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Individual with LGMD: William - LGMD Awareness Foundation\" \/>\n<meta property=\"og:description\" content=\"LGMD \u201cSpotlight interview\u201d Name:&nbsp; 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