{"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\/tr\/individuals-with-lgmd-interviews\/2019\/10\/01\/william\/","title":{"rendered":"LGMD'li Birey: 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 \"Spotlight r\u00f6portaj\u0131\"<\/strong><\/p>\n\n\n\n<p><strong>\u0130sim<\/strong>:  William&nbsp;\n<strong>Ya\u015f<\/strong>:\n62 ya\u015f\u0131nda<\/p>\n\n\n\n<p><strong>\u00dclke<\/strong>: Birle\u015fik Devletler<\/p>\n\n\n\n<p><strong>LGMD Alt Tipi<\/strong>:   LGMD D1 DNAJB6 ile ili\u015fkili (Eski ad\u0131yla LGMD tip 1D)<\/p>\n\n\n\n<p><strong>Ka\u00e7 ya\u015f\u0131nda te\u015fhis konuldu?<\/strong>:<\/p>\n\n\n\n<p>Bana klinik olarak 40 ya\u015f\u0131nda te\u015fhis konuldu ve 5 y\u0131l sonra, 45 ya\u015f\u0131ndayken LGMD 1D te\u015fhisimin genetik onay\u0131n\u0131 ald\u0131m.<\/p>\n\n\n\n<p><strong>\u0130lk belirtileriniz neydi?<\/strong>:<\/p>\n\n\n\n<p>\u00c7ocukken yava\u015ft\u0131m.  45 ya\u015f civar\u0131nda ko\u015fmakta zorluk \u00e7ekmeye ba\u015flad\u0131m.<\/p>\n\n\n\n<p><strong>LGMD hastas\u0131 olan ba\u015fka aile \u00fcyeleriniz var m\u0131?<\/strong><\/p>\n\n\n\n<p>Evet, 67 ya\u015f\u0131ndaki erkek karde\u015fimde LGMD1D var ve benim de\nK\u0131z\u0131m.<\/p>\n\n\n\n<p><strong>En b\u00fcy\u00fck zorluklar olarak neleri g\u00f6r\u00fcyorsunuz?\nLGMD ile ya\u015famda<\/strong>:<\/p>\n\n\n\n<p>Benim i\u00e7in en b\u00fcy\u00fck zorluk, T\u00fcrkiye'ye al\u0131\u015fmak oldu.\nzay\u0131fl\u0131k ve kademeli olarak yava\u015flamak zorunda kalmak.<\/p>\n\n\n\n<p><strong>En b\u00fcy\u00fck ba\u015far\u0131n\u0131z nedir?<\/strong>:<\/p>\n\n\n\n<p>En b\u00fcy\u00fck ba\u015far\u0131m LGMD-1D'yi ba\u015flatmak oldu\nKar amac\u0131 g\u00fctmeyen bir kamu vakf\u0131 olan DNAJB6 Vakf\u0131'n\u0131n misyonu\nEkstremite Ku\u015fa\u011f\u0131 Kas Hastal\u0131\u011f\u0131 te\u015fhisi konulan bireyler i\u00e7in merkezi bir konum sa\u011flamak\nDistrofi tip 1D (LGMD1D) ile tan\u0131\u015fmak, ilgili haberleri birle\u015ftirmek ve\nAra\u015ft\u0131rmalar\u0131 ilerletmek i\u00e7in ba\u011f\u0131\u015f toplama \u00e7abalar\u0131.&nbsp; <a href=\"https:\/\/lgmd1d.org\">https:\/\/lgmd1d.org<\/a>\n<\/p>\n\n\n\n<p>Ayr\u0131ca, LGMD'nin otozomal dominant formu te\u015fhisi konan t\u00fcm hastalar i\u00e7in bir Hasta Kay\u0131t Defteri olu\u015fturdum.  (LGMD tip 1)<\/p>\n\n\n\n<p><strong>LGMD sizi nas\u0131l etkiledi?\nBug\u00fcn oldu\u011fun ki\u015fi:<\/strong><\/p>\n\n\n\n<p>LGMD hayat\u0131m\u0131 ve bug\u00fcn kim oldu\u011fumu etkiledi.  Yava\u015flamak bana neyin ne oldu\u011funu takdir ettirdi.\n\u00c7evremdekiler, ailem, arkada\u015flar\u0131m ve ba\u011flant\u0131lar\u0131m.<\/p>\n\n\n\n<p><strong>D\u00fcnyan\u0131n LGMD hakk\u0131nda ne bilmesini istersiniz?<\/strong>:<\/p>\n\n\n\n<p>S\u00f6z\u00fc yaymaya ve tedaviye yard\u0131mc\u0131 olacak \u015fekillerde ba\u011flant\u0131 kurmaya devam etmeliyiz.  \u00d6rne\u011fin, otozomal dominant LGMD (LGMD tip 1) hasta kayd\u0131, ara\u015ft\u0131rma ve tedavi bulma a\u00e7\u0131s\u0131ndan hayati \u00f6nem ta\u015f\u0131yacakt\u0131r.<\/p>\n\n\n\n<p><strong>LGMD hastal\u0131\u011f\u0131n\u0131z yar\u0131n \"tedavi\" edilebilseydi, ne olurdu?\nyapmak isteyece\u011finiz ilk \u015fey<\/strong>:<\/p>\n\n\n\n<p>Yar\u0131n iyile\u015fmi\u015f olsayd\u0131m, dans etmeye gider ve torunlar\u0131mla futbol oynard\u0131m!!!<\/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\/tr\/individuals-with-lgmd-interviews\/2019\/10\/01\/william\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\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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