{"id":3178,"date":"2020-01-12T12:52:48","date_gmt":"2020-01-12T18:52:48","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3178"},"modified":"2020-01-12T12:52:48","modified_gmt":"2020-01-12T18:52:48","slug":"natasha","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/de\/individuals-with-lgmd-interviews\/2020\/01\/12\/natasha\/","title":{"rendered":"EINZELPERSON MIT LGMD: Natasha"},"content":{"rendered":"<figure class=\"wp-block-image size-large\"><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\/2020\/01\/LGMD1D-Natasha-1024x576.png\" alt=\"\" class=\"lazyload wp-image-3179\"\/><\/figure>\n\n\n\n<h3 class=\"wp-block-heading\">LGMD \"SPOTLIGHT INTERVIEW\"<\/h3>\n\n\n\n<p><strong>Name<\/strong>:  Natasha&nbsp;\n<strong>Alter<\/strong>:\n25 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 (fr\u00fcher LGMD Typ\n1D)<\/p>\n\n\n\n<p><strong>In welchem Alter wurde bei Ihnen die Diagnose gestellt?<\/strong>:<\/p>\n\n\n\n<p>Die Diagnose wurde bei mir im Alter von 23 Jahren gestellt.<\/p>\n\n\n\n<p><strong>Was waren Ihre ersten Symptome?<\/strong>:<\/p>\n\n\n\n<p>Unser Subtyp ist ein Sp\u00e4tstadium, so dass ich derzeit keine Symptome habe, obwohl es in meiner Kindheit kleine Dinge gab, die jetzt, da ich von meiner Diagnose wei\u00df, mehr Sinn machen.  Als ich aufwuchs, konnte ich nicht so schnell rennen wie meine Altersgenossen und hatte zum Beispiel beim Tanzen Schwierigkeiten, vom Boden aufzustehen, ohne meine H\u00e4nde zu benutzen.<\/p>\n\n\n\n<p><strong>Haben Sie andere Familienmitglieder, die LGMD haben?<\/strong><\/p>\n\n\n\n<p>Ja, mein Vater, mein Onkel (v\u00e4terlicherseits) und mein Gro\u00dfvater v\u00e4terlicherseits\nGro\u00dfvater v\u00e4terlicherseits haben alle die gleiche Diagnose.<\/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 das Wissen, dass eines Tages\ndass meine Mobilit\u00e4t eines Tages geringer sein wird als jetzt und dass ich vielleicht nicht mehr in der Lage sein werde\nden aktiven Lebensstil fortsetzen kann, den ich derzeit gerne f\u00fchre.<\/p>\n\n\n\n<p><strong>Was ist Ihre gr\u00f6\u00dfte Errungenschaft?<\/strong>:<\/p>\n\n\n\n<p>Ich bin mir nicht sicher, was meine gr\u00f6\u00dfte Errungenschaft ist... ich w\u00fcrde sagen, die famili\u00e4ren und freundschaftlichen Bindungen, die ich erhalten habe.  Und die Gemeinschaft, die wir f\u00fcr die dominanten Formen der LGMD durch die LGMD-1D DNAJB6 Foundation aufgebaut haben und weiter aufbauen. Die LGMD-1D DNAJB6 Foundation ist eine gemeinn\u00fctzige \u00f6ffentliche Stiftung, deren Aufgabe es ist, eine zentrale Anlaufstelle f\u00fcr Menschen zu schaffen, bei denen Gliederg\u00fcrtelmuskeldystrophie Typ 1D (LGMD1D) diagnostiziert wurde, um sich zu treffen, relevante Nachrichten zu b\u00fcndeln und Spendenaktionen zu starten, um die Forschung voranzutreiben.&nbsp; <a href=\"https:\/\/lgmd1d.org\">https:\/\/lgmd1d.org<\/a> &nbsp;Wir haben auch ein Patientenregister f\u00fcr alle Patienten eingerichtet, bei denen eine autosomal dominante Form der LGMD diagnostiziert wurde.&nbsp; <\/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>Ich muss immer an die Zukunft denken und daran, wie sich mein Handeln\nauf meinen K\u00f6rper, die Menschen, die ich liebe, und die Familie, die ich gro\u00dfziehen m\u00f6chte, auswirken wird.  Das hat mich dazu gebracht, geduldiger zu werden und zu versuchen\neinen weniger k\u00f6rperlich intensiven Lebensstil zu f\u00fchren.<\/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\ndas Wort verbreiten und Verbindungen herstellen, die zu einer Heilung beitragen.  Zum Beispiel ist ein autosomal dominantes LGMD\n(LGMD Typ 1) f\u00fcr die Forschung und die Suche nach einem Heilmittel 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 feiern!! <\/p>\n\n\n\n<hr class=\"wp-block-separator\"\/>\n\n\n\n<p>Wenn Sie weitere \"LGMD Spotlight Interviews\" lesen oder sich f\u00fcr ein Interview zur Verf\u00fcgung stellen m\u00f6chten, besuchen Sie bitte unsere Website: <a href=\"https:\/\/www.lgmd-info.org\/de\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD &#8220;SPOTLIGHT INTERVIEW&#8221; Name:&nbsp; Natasha&nbsp; Age: 25 years old Country: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":3179,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,102,104],"tags":[],"class_list":["post-3178","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd-d1-dnajb6-related","category-lgmd1d"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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