{"id":3558,"date":"2020-09-04T10:02:29","date_gmt":"2020-09-04T15:02:29","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3558"},"modified":"2024-02-09T14:24:33","modified_gmt":"2024-02-09T14:24:33","slug":"tatyana","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/de\/individuals-with-lgmd-interviews\/2020\/09\/04\/tatyana\/","title":{"rendered":"EINZELPERSON MIT LGMD: Tatyana"},"content":{"rendered":"<p><strong>LGMD \"SPOTLIGHT INTERVIEW\"&nbsp;<\/strong><\/p>\n\n\n\n<div class=\"wp-block-image\"><figure class=\"aligncenter 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\/09\/LGMD2A-Tatyana-1024x576.png\" alt=\"\" class=\"lazyload wp-image-3559\"\/><\/figure><\/div>\n\n\n\n<p><strong>Name<\/strong>:  Tatjana&nbsp;&nbsp;      <strong>Alter<\/strong>: 33 Jahre alt<\/p>\n\n\n\n<p><strong>Land<\/strong>: Russland<\/p>\n\n\n\n<p><strong>LGMD Unter-Typ<\/strong>:  LGMD 2A \/ R1 Calpain3-verwandt<\/p>\n\n\n\n<p><strong>In welchem Alter wurde bei Ihnen die Diagnose gestellt?<\/strong>:<\/p>\n\n\n\n<p>Bei mir wurde mit 14-15 Jahren ein unbekannter Subtyp von LGMD diagnostiziert. Als ich 27 oder 28 war, wurde meine Diagnose genetisch best\u00e4tigt.<\/p>\n\n\n\n<p><strong>Was waren Ihre ersten Symptome?<\/strong>:<\/p>\n\n\n\n<p>Meine ersten Symptome waren Schwierigkeiten beim Laufen, Treppensteigen und ich konnte auch nie Klimmz\u00fcge machen.<\/p>\n\n\n\n<p><strong>Haben Sie andere Familienmitglieder, die LGMD haben?<\/strong><\/p>\n\n\n\n<p>Nein, ich bin der Einzige mit LGMD in meiner Familie.<\/p>\n\n\n\n<p><strong>Was sind f\u00fcr Sie die gr\u00f6\u00dften Herausforderungen im Leben mit LGMD?<\/strong>:<\/p>\n\n\n\n<p>Die Akzeptanz war viel schwieriger als eine k\u00f6rperliche Behinderung. Du bist selten, du bist anders. Du geh\u00f6rst zu keiner gew\u00f6hnlichen sozialen Gruppe. Man hat niemanden, der seine eigenen Erfahrungen mit einem teilen und einem helfen kann. Dank des Internets treffe ich jetzt Menschen mit verschiedenen Arten von Muskeldystrophie, die wissen, wie es ist. Jetzt wei\u00df ich, wie wichtig es ist, Teil einer Gemeinschaft zu sein, in der man Unterst\u00fctzung finden kann.<\/p>\n\n\n\n<p>Und die zweite Herausforderung ist die mangelnde Erreichbarkeit. Ich muss immer jeden meiner Schritte, jede meiner Routen planen.<\/p>\n\n\n\n<p><strong>Was ist Ihre gr\u00f6\u00dfte Errungenschaft?<\/strong>:<\/p>\n\n\n\n<p>Ich wei\u00df es nicht J Mein Leben ist ganz gew\u00f6hnlich: Ich arbeite, ich lerne neue Dinge. Ich liebe meine Familie und meine Freunde. Ich glaube, meine gr\u00f6\u00dfte Errungenschaft f\u00fcr mich selbst ist die \u00dcberwindung meiner Angst, wegen des fortschreitenden Kraftverlusts abh\u00e4ngig zu sein. Das macht mir keine Angst mehr. Jetzt suche ich nur noch nach Wegen, wie ich mein Leben mit LGMD leichter gestalten kann.<\/p>\n\n\n\n<p><strong>Wie hat LGMD Sie zu der Person gemacht, die Sie heute sind?<\/strong><\/p>\n\n\n\n<p>Es hat mich zutiefst ver\u00e4ndert. Ich habe mehr Empathie, ich bin toleranter. Ich sch\u00e4tze Dinge, die normalerweise als selbstverst\u00e4ndlich angesehen werden.<\/p>\n\n\n\n<p><strong>Was m\u00f6chten Sie der Welt \u00fcber LGMD mitteilen?<\/strong>:<\/p>\n\n\n\n<p>Ich m\u00f6chte, dass die Welt wei\u00df, dass LGMD eine fortschreitende Krankheit ist und dass es Zeit braucht, sich daran zu gew\u00f6hnen. Und ich m\u00f6chte, dass die Welt wei\u00df, dass das Leben mit LGMD so gl\u00fccklich sein kann wie jedes andere Leben auch.<\/p>\n\n\n\n<p><strong>Wenn Ihre LGMD morgen \"geheilt\" werden k\u00f6nnte, was w\u00fcrden Sie als Erstes tun wollen?<\/strong>:<\/p>\n\n\n\n<p>Ich w\u00fcrde Walzer tanzen! Und ich w\u00fcrde auch rennen! Beides - so schnell wie ich kann, um Wind zu sp\u00fcren!<\/p>\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\/\">http:\/\/lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSPOTLIGHT INTERVIEW\u201d&nbsp; Name:&nbsp; Tatyana&nbsp;&nbsp; Age: 33 yrs. old Country: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":3559,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[],"class_list":["post-3558","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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