{"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\/de\/individuals-with-lgmd-interviews\/2019\/10\/01\/william\/","title":{"rendered":"Person mit 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 \"Spotlight-Interview\"<\/strong><\/p>\n\n\n\n<p><strong>Name<\/strong>:  William&nbsp;\n<strong>Alter<\/strong>:\n62 Jahre alt<\/p>\n\n\n\n<p><strong>Land<\/strong>: Vereinigte Staaten<\/p>\n\n\n\n<p><strong>LGMD Unter-Typ<\/strong>:   LGMD D1 DNAJB6-bezogen (ehemals LGMD Typ 1D)<\/p>\n\n\n\n<p><strong>In welchem Alter wurde bei Ihnen die Diagnose gestellt?<\/strong>:<\/p>\n\n\n\n<p>Ich wurde im Alter von 40 Jahren klinisch diagnostiziert, und 5 Jahre sp\u00e4ter, im Alter von 45 Jahren, erhielt ich die genetische Best\u00e4tigung meiner LGMD 1D-Diagnose.<\/p>\n\n\n\n<p><strong>Was waren Ihre ersten Symptome?<\/strong>:<\/p>\n\n\n\n<p>Als Kind war ich langsam.  Im Alter von 45 Jahren hatte ich Schwierigkeiten beim Laufen.<\/p>\n\n\n\n<p><strong>Haben Sie andere Familienmitglieder, die LGMD haben?<\/strong><\/p>\n\n\n\n<p>Ja, mein Bruder, der 67 Jahre alt ist, hat LGMD1D, und meine Tochter hat auch\nTochter.<\/p>\n\n\n\n<p><strong>Was sind f\u00fcr Sie die gr\u00f6\u00dften Herausforderungen\nim Leben mit LGMD<\/strong>:<\/p>\n\n\n\n<p>Die gr\u00f6\u00dfte Herausforderung f\u00fcr mich war die Anpassung an die\nSchw\u00e4che und die Notwendigkeit, allm\u00e4hlich langsamer zu werden.<\/p>\n\n\n\n<p><strong>Was ist Ihre gr\u00f6\u00dfte Errungenschaft?<\/strong>:<\/p>\n\n\n\n<p>Meine gr\u00f6\u00dfte Errungenschaft war die Gr\u00fcndung der LGMD-1D\nDNAJB6 Foundation zu gr\u00fcnden, eine gemeinn\u00fctzige \u00f6ffentliche Stiftung, deren Aufgabe es ist\neine zentrale Anlaufstelle f\u00fcr Menschen mit der Diagnose Limb Girdle Muscular\nGliederg\u00fcrtelmuskeldystrophie Typ 1D (LGMD1D) diagnostiziert wurde, um sich zu treffen, relevante Nachrichten zu b\u00fcndeln und\nFundraising-Bem\u00fchungen, um die Forschung voranzutreiben.&nbsp; <a href=\"https:\/\/lgmd1d.org\">https:\/\/lgmd1d.org<\/a>\n<\/p>\n\n\n\n<p>Ich habe auch ein Patientenregister f\u00fcr alle Patienten eingerichtet, bei denen eine autosomal dominante Form von LGMD diagnostiziert wurde.  (LGMD Typ 1)<\/p>\n\n\n\n<p><strong>Wie hat LGMD Sie zu der Person gemacht, die Sie heute sind?\nPerson, die Sie heute sind:<\/strong><\/p>\n\n\n\n<p>LGMD hat mein Leben beeinflusst und mich zu dem gemacht, was ich heute bin.  Durch die Entschleunigung wei\u00df ich zu sch\u00e4tzen, was um mich herum ist\nwas mich umgibt, Familie, Freunde und Beziehungen.<\/p>\n\n\n\n<p><strong>Was m\u00f6chten Sie der Welt \u00fcber LGMD mitteilen?<\/strong>:<\/p>\n\n\n\n<p>Wir m\u00fcssen weiterhin das Wort verbreiten und Kontakte kn\u00fcpfen, um eine Heilung zu erm\u00f6glichen.  Ein autosomal-dominant vererbtes LGMD-Patientenregister (LGMD Typ 1) zum Beispiel wird f\u00fcr die Forschung und die Suche nach einer Heilung von entscheidender Bedeutung sein.<\/p>\n\n\n\n<p><strong>Wenn Ihre LGMD morgen \"geheilt\" werden k\u00f6nnte, was\nw\u00e4re das Erste, was Sie tun w\u00fcrden, um<\/strong>:<\/p>\n\n\n\n<p>Wenn ich morgen geheilt w\u00e4re, w\u00fcrde ich tanzen gehen und mit meinen Enkelinnen Fu\u00dfball spielen!!!<\/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\/de\/individuals-with-lgmd-interviews\/2019\/10\/01\/william\/\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\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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