{"id":5544,"date":"2021-10-17T02:17:57","date_gmt":"2021-10-17T02:17:57","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5544"},"modified":"2024-02-09T14:23:59","modified_gmt":"2024-02-09T14:23:59","slug":"individual-with-lgmd-jade","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/de\/individuals-with-lgmd-interviews\/2021\/10\/17\/individual-with-lgmd-jade\/","title":{"rendered":"EINZELPERSON MIT LGMD: Jade"},"content":{"rendered":"

\"<\/p>\n

LGMD \"SPOTLIGHT INTERVIEW\"<\/strong><\/h3>\n

Name<\/strong>: Jade<\/p>\n

Alter<\/strong>: 20 Jahre alt<\/p>\n

Land<\/strong>: Vereinigte Staaten<\/p>\n

LGMD Unter-Typ<\/strong>: LGMD 2A\/R1 Calpain 3-verwandt<\/p>\n

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

Ich habe die Diagnose offiziell im M\u00e4rz 2021 erhalten, also ist das alles noch neu f\u00fcr mich.<\/p>\n

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

Als ich das erste Mal Symptome bemerkte, dachte ich, ich sei nur dehydriert. Ich f\u00fchlte mich schwach, meine Beine waren wie Wackelpudding, und ich hatte Schmerzen in den H\u00fcften. Jetzt, da ich meine Diagnose kenne, kann ich zur\u00fcckblicken und sehe die Symptome schon im Alter von 12 Jahren. Ich spielte Softball und konnte meine Beine nicht schnell laufen lassen, egal wie sehr ich mich anstrengte. Ich hatte auch schon immer ungew\u00f6hnlich gro\u00dfe Waden, aber jetzt wei\u00df ich, dass das an der mangelnden Muskelkraft der Quads liegen kann.<\/p>\n

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

Nein, ich bin die einzige Person in meiner Familie mit LGMD2A\/R1.<\/p>\n

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

Die Treppe h\u00e4lt mich von vielem ab. Ich kann immer noch Treppen steigen, aber es kostet mich so viel M\u00fche und Energie. Das ist es nicht wert. Ich muss auch lernen, mein t\u00e4gliches Leben anzupassen, z. B. einen Stuhl zum Sitzen und Ausruhen zu haben, wenn ich koche, mich auf den Boden zu setzen, um Kinder zu halten, anstatt sie hochzuheben, und die Anzahl der Dinge, die ich am Tag erledige, zu begrenzen. Die gr\u00f6\u00dfte H\u00fcrde, die ich erlebt habe, ist die mentale H\u00fcrde in Bezug auf meinen elektrischen Rollstuhl. Ich wei\u00df, dass ich ihn benutzen muss, aber es gibt eine mentale Barriere, die meine Diagnose noch nicht akzeptiert hat.<\/p>\n

Was ist Ihr gr\u00f6\u00dfter ERFOLG?<\/strong><\/p>\n

Meine Beziehungen und die Tatsache, dass ich immer noch eine positive Einstellung zum Leben habe. Ich habe die Highschool abgeschlossen, aber danach habe ich mich mit der Diagnose herumgeschlagen, also habe ich es noch nicht aufs College geschafft, aber das ist ein Ziel von mir.<\/p>\n

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

Ich habe dadurch die F\u00e4higkeit erlangt, mir meiner selbst bewusster zu werden und mich selbst weiterzubilden. Ich habe jetzt ein besseres Gesp\u00fcr f\u00fcr meinen K\u00f6rper, ich kann erkennen, ob ich eine Rhabdomyolyse habe, ob ich mich abrackere oder ob ich mich einfach nur ausruhen muss. Da die LGMD kaum erforscht ist, muss ich mich selbst weiterbilden und f\u00fcr sie eintreten. Ich lebe in einer halb-l\u00e4ndlichen Gemeinde, so dass kein Arzt wusste, was er f\u00fcr mich tun konnte oder was ich hatte. Inzwischen bin ich so weit, dass ich meinen Hausarzt anrufen und ihm sagen kann, was los ist, und er wird mich entsprechend behandeln.<\/p>\n

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

LGMD sieht nicht bei jedem gleich aus. Nicht jeder wird gehf\u00e4hig sein und nicht jeder wird im Rollstuhl sitzen. Genauso wie nicht jeder eine fr\u00fche Diagnose erh\u00e4lt und manche Menschen nie eine bekommen (obwohl es jetzt einfacher ist). Nicht jeder wird die Diagnose gut verkraften und zuversichtlich weitermachen, und nicht jeder wird aufgrund der Diagnose in eine Spirale geraten. Gehen Sie niemals davon aus, dass Sie wissen, was jemand k\u00f6rperlich und geistig durchmacht.<\/p>\n

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

Als Erstes w\u00fcrde ich gerne einen abenteuerlichen Urlaub\/Road Trip machen. Im Moment ist das f\u00fcr mich nicht machbar, aber ich wollte schon immer mal zum Grand Canyon, nach Yosemite, zum h\u00f6chsten Punkt der Appalachen und zu den Vulkanen auf Hawaii fahren.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5545,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,82,16],"class_list":["post-5544","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","tag-lgmd2a-calpainopathy","tag-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Jade - 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\/10\/17\/individual-with-lgmd-jade\/\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Jade - 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