{"id":419,"date":"2015-03-12T21:50:04","date_gmt":"2015-03-13T02:50:04","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=312"},"modified":"2015-03-12T21:50:04","modified_gmt":"2015-03-13T02:50:04","slug":"donavon","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/de\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/","title":{"rendered":"EINZELPERSON MIT LGMD: Donavon"},"content":{"rendered":"<p>03\/12\/2015:<\/p>\n<p><strong>Name<\/strong>: Donavon\u00a0 <strong>Alter<\/strong>: 52<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2015\/03\/LGMD2D-Donavon.png\"><img decoding=\"async\" class=\"lazyload  size-medium wp-image-313 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\/2015\/03\/LGMD2D-Donavon-300x169.png\" alt=\"LGMD2D - Donavon\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>Land<\/strong>: Vereinigte Staaten<\/p>\n<p><strong>LGMD Unter-Typ<\/strong>: LGMD2D<\/p>\n<p><strong>In welchem Alter wurde bei Ihnen die Diagnose gestellt?<\/strong>:<\/p>\n<p>Ich wurde im Alter von 16 Jahren diagnostiziert.<\/p>\n<p><strong>Was waren Ihre ersten Symptome?<\/strong>:<\/p>\n<p>Ich konnte nie sehr schnell laufen und hatte Probleme, Treppen zu steigen. Einen Teil der Zeit lebten wir auf einem Bauernhof, und wenn es darum ging, Hausarbeiten zu erledigen, war ich nicht in der Lage, einen vollen Futtersack zu heben.<\/p>\n<p><strong>Haben Sie andere Familienmitglieder, die LGMD haben?<\/strong><\/p>\n<p>Ja, ich habe vier Schwestern und zwei Nichten mit LGMD.<\/p>\n<p><strong>Was sind f\u00fcr Sie die gr\u00f6\u00dften Herausforderungen im Leben mit LGMD?<\/strong>:<\/p>\n<p>All die Hilfe, die ich im Laufe der Jahre gebraucht habe, und es werden jedes Jahr mehr. Ich bin sehr dankbar f\u00fcr meine gro\u00dfartige Frau und die gro\u00dfartigen Freunde, die mir im Laufe der Jahre geholfen haben. Meine Schwester Monica ist 2012 an den Komplikationen der LGMD verstorben, daher habe ich im Hinterkopf, dass ich schw\u00e4cher werde.<\/p>\n<p><strong>Was ist Ihre gr\u00f6\u00dfte Errungenschaft?<\/strong>:<\/p>\n<p>Ich bin der erste Mensch, bei dem eine Gentherapie f\u00fcr Muskeldystrophie durchgef\u00fchrt wurde. Nachdem mein Gendefekt festgestellt worden war, rief ich jeden Monat einen Arzt an, und als die erste Studie anlief, meldete ich mich freiwillig. Die Gentherapie er\u00f6ffnete mir viele M\u00f6glichkeiten, da ich vor dem US-Senat aussagte. Ich half bei der Lobbyarbeit f\u00fcr den ersten MD Care Act in Washington DC. Au\u00dferdem war ich sechs Jahre lang Mitglied eines Aufsichtsausschusses bei den National Institutes of Health.<\/p>\n<p><strong>Wie hat LGMD dich zu der Person gemacht, die du heute bist?<\/strong><strong>:<\/strong><\/p>\n<p>Wegen meiner LGMD musste ich, glaube ich, h\u00e4rter um Jobs k\u00e4mpfen ... manche Leute h\u00f6ren, dass ich Muskeldystrophie habe, oder sehen mich im Rollstuhl und denken, ich sei zu nichts f\u00e4hig. Infolgedessen habe ich in vielen Bereichen meines Lebens eine sehr entschlossene und optimistische Einstellung entwickelt. Ich sehe andere Menschen mit Behinderungen mit anderen Augen, da ich wei\u00df, mit welchen Schwierigkeiten sie t\u00e4glich zu k\u00e4mpfen haben. Ich bin dankbar, dass ich Christin bin, denn wenn es eines Tages zu meinen Lebzeiten keine Heilung gibt, wird es im Himmel keine Krankheiten mehr geben.<\/p>\n<p><strong>Was m\u00f6chten Sie der Welt \u00fcber LGMD mitteilen?<\/strong>:<\/p>\n<p>Ich glaube, dass wir einer Behandlung oder Heilung sehr nahe sind. Ich war 1999 an der ersten Gentherapie-Studie beteiligt und bin sehr gespannt auf die n\u00e4chste Gentherapie-Studie, bei der der neue Vektor \u00fcber das Blutsystem verabreicht werden soll.<\/p>\n<p><strong>Wenn Ihre LGMD morgen \"geheilt\" werden k\u00f6nnte, was w\u00fcrden Sie als Erstes tun wollen?<\/strong>:<\/p>\n<p>Ein Auto oder einen Pickup zu fahren, anstatt einen Lieferwagen zu fahren. Eines Tages m\u00f6chte ich wieder einen Pontiac GTO haben.<\/p>","protected":false},"excerpt":{"rendered":"<p>03\/12\/2015: Name: Donavon\u00a0 Age: 52 Country: United States LGMD Sub-Type: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":313,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,28],"tags":[29,16],"class_list":["post-419","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2d","tag-lgmd2d","tag-united-states"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>LGMD Spotlight Interview - Donavon<\/title>\n<meta name=\"description\" content=\"Donavon, who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares his experience in living with this progressive neuro-muscular disease.\" \/>\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\/2015\/03\/12\/donavon\/\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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