{"id":5372,"date":"2021-07-11T21:37:18","date_gmt":"2021-07-11T21:37:18","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5372"},"modified":"2024-02-09T14:24:04","modified_gmt":"2024-02-09T14:24:04","slug":"individual-with-lgmd-lena","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/de\/individuals-with-lgmd-interviews\/2021\/07\/11\/individual-with-lgmd-lena\/","title":{"rendered":"EINZELPERSON MIT LGMD: Lena"},"content":{"rendered":"

\"Lgmd2j<\/p>\n

Name<\/strong>: Lena\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Alter<\/strong>: \u00a044<\/p>\n

Land<\/strong>: USA<\/p>\n

LGMD Unter-Typ<\/strong>: Limb-Girdle-Muskeldystrophie Typ 2J\/R10 Titan-bezogen<\/p>\n

In welchem Alter wurde bei Ihnen die Diagnose gestellt?<\/strong>?<\/p>\n

Die Diagnose wurde bei mir im Alter von 42 Jahren gestellt.<\/p>\n

Was waren Ihre ersten Symptome?<\/strong><\/p>\n

Als Vorschullehrerin bemerkte ich, dass es sehr schwierig wurde, vom Boden aufzustehen. Dann begann ich zu fallen und das Gleichgewicht zu verlieren.<\/p>\n

Haben Sie andere Familienmitglieder, die an LGMD leiden? <\/strong><\/p>\n

Bei meiner Schwester und mir wurde LGMD Subtyp 2J diagnostiziert, und wir glauben, dass auch unser Vater und alle unsere Onkel die Krankheit gehabt haben k\u00f6nnten. (Sie sind alle verstorben und wurden nie diagnostiziert.)<\/p>\n

Was sind f\u00fcr Sie die gr\u00f6\u00dften Herausforderungen im Leben mit LGMD?<\/strong>?<\/p>\n

Ich kann nicht mehr alle k\u00f6rperlichen Aktivit\u00e4ten aus\u00fcben, die ich gerne machen w\u00fcrde. Die Ungewissheit \u00fcber die Zukunft und ob meine Kinder ebenfalls an LGMD erkranken werden. Eine weitere Herausforderung, mit der ich zu k\u00e4mpfen habe, ist die emotionale Bew\u00e4ltigung der allm\u00e4hlichen Schw\u00e4chung meiner Beine und Gliedma\u00dfen.<\/p>\n

Was ist Ihre gr\u00f6\u00dfte Errungenschaft? <\/strong><\/p>\n

Ich bin stolz darauf, eine Mutter und eine Ehefrau zu sein. Ich bin auch stolz darauf, in einer sozialen Gruppe der Gemeinde aktiv zu sein, bei \"Rock The Vote\" mitzumachen und zu lernen, wie man soziale Medien nutzt, um Menschen auf der ganzen Welt zu treffen.<\/p>\n

Wie hat LGMD Sie zu der Person gemacht, die Sie heute sind? <\/strong><\/p>\n

Ich setze mich mehr f\u00fcr meine Gesundheit ein. Ich bin eher in der Lage, Fragen zu stellen und Ma\u00dfnahmen zu ergreifen, die mir und anderen helfen, die sonst vielleicht ignoriert oder \u00fcbersehen w\u00fcrden.<\/p>\n

Was m\u00f6chten Sie der Welt \u00fcber LGMD mitteilen?<\/strong>?<\/p>\n

Sie k\u00f6nnen auch mit LGMD lieben, lachen und ein sinnvolles Leben f\u00fchren. Die k\u00f6rperlichen Einschr\u00e4nkungen unseres K\u00f6rpers hindern uns nicht daran, weiter zu lernen und die Welt zu erleben.<\/p>\n

Wenn Ihre LGMD morgen \"geheilt\" werden k\u00f6nnte, was w\u00fcrden Sie als Erstes tun wollen?<\/strong>?<\/p>\n

Wenn ich morgen geheilt werden k\u00f6nnte, w\u00fcrde ich an den Strand fahren und mit den Zehen im Meer wackeln!!!<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5373,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,66],"tags":[68,78],"class_list":["post-5372","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2j","tag-lgmd2j-titinopathy","tag-lgmd2j-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Lena - 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\/2021\/07\/11\/individual-with-lgmd-lena\/\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Lena - 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