{"id":1293,"date":"2016-08-17T12:31:33","date_gmt":"2016-08-17T17:31:33","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1293"},"modified":"2016-08-17T12:31:33","modified_gmt":"2016-08-17T17:31:33","slug":"melanie","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/de\/individuals-with-lgmd-interviews\/2016\/08\/17\/melanie\/","title":{"rendered":"EINZELPERSON MIT LGMD: Melanie"},"content":{"rendered":"

LGMD \"Spotlight Interview\"<\/p>\n

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NAME<\/strong>: Melanie \u00a0 AGE<\/strong>: 33\"LGMD2B<\/a><\/div>\n<\/div>\n
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LAND:<\/strong> USA<\/span><\/span><\/div>\n<\/div>\n
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LGMD Unter-Typ<\/strong>: LGMD2b (Dysferlinopathie\/Myoshi-Myopathie) <\/span><\/span><\/div>\n<\/div>\n
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\u00a0<\/span><\/strong><\/div>\n<\/div>\n
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IN WELCHEM ALTER WURDE BEI IHNEN DIE DIAGNOSE GESTELLT?<\/strong><\/div>\n<\/div>\n
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Ich wurde eine Woche vor meinem 29. Geburtstag diagnostiziert.<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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WAS WAREN IHRE ERSTEN SYMPTOME? <\/span><\/span><\/strong><\/div>\n<\/div>\n
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Ich konnte mich nicht mehr auf die Zehen stellen, hatte Hammerzehen (Fu\u00dfdeformit\u00e4t) und hatte st\u00e4ndig Schmerzen und war ersch\u00f6pft.<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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HABEN SIE ANDERE FAMILIENMITGLIEDER, DIE AN LGMD LEIDEN:<\/strong> <\/span><\/span><\/div>\n<\/div>\n
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Nein, nicht eine!<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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WAS IST IHRER MEINUNG NACH DIE GR\u00d6SSTE HERAUSFORDERUNG IM LEBEN MIT LGMD: <\/span><\/span><\/strong><\/div>\n<\/div>\n
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Der Verlust der F\u00e4higkeit, allt\u00e4gliche Aufgaben und Aktivit\u00e4ten zu erledigen, hat das Leben ziemlich schwierig gemacht. Man muss f\u00fcr jede Kleinigkeit vorausplanen. Es ist auch schwierig, wenn die Menschen das nicht verstehen. Wenn du nicht krank aussiehst, nehmen die Leute deine Bed\u00fcrfnisse nicht ernst.<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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WAS IST IHRE GR\u00d6SSTE ERRUNGENSCHAFT: <\/span><\/span><\/strong><\/div>\n<\/div>\n
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Meinen Master-Abschluss zu machen und einen tollen Job bei der Bundesregierung zu bekommen (w\u00e4hrend ich jeden Tag krank war).<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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WIE HAT LGMD SIE ZU DER PERSON GEMACHT, DIE SIE HEUTE SIND? <\/span><\/span><\/strong><\/div>\n<\/div>\n
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Als ich die Diagnose erhielt, f\u00fchlte ich mich hilflos und allein. Ich kannte keinen einzigen anderen Menschen mit dieser Form von MD, und ich hatte Angst. Anstatt zu schmollen oder mich davon unterkriegen zu lassen, dachte ich: \"Warum nicht etwas dagegen tun?\" Also begann ich, mich \u00fcber die MDA zu informieren und dar\u00fcber, wie man Spendengelder sammeln kann. Ich gr\u00fcndete ein MDA-Muscle-Walk-Team und habe seitdem jedes Jahr einen. Dann beschloss ich, alles zu tun, was ich kann, solange ich es noch kann (da ich die F\u00e4higkeit zu laufen verliere). Und das habe ich getan. Ich bin \u00fcberall hin gereist, an manche Orte sogar allein. Ich bin sogar Fallschirmspringen gegangen. Ich glaube, dass diese Diagnose mich zu einem noch positiveren Menschen gemacht hat. Sie hat mich sicherlich zu einem noch st\u00e4rkeren Menschen gemacht. Viele der Erfahrungen, die ich in den letzten 4 Jahren gemacht habe, sind ein direktes Ergebnis davon, dass ich der LGMD die Stirn geboten und bewiesen habe, dass die Chancen schlecht stehen.<\/div>\n<\/div>\n
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\u00a0<\/span><\/strong><\/div>\n<\/div>\n
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WAS SOLL DIE WELT \u00dcBER LGMD WISSEN?<\/span><\/span><\/strong><\/div>\n<\/div>\n
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Erstens: Die Krankheit definiert uns nicht. Wir sind, wer wir sind, und wir haben nur zuf\u00e4llig diese schreckliche Krankheit. Zweitens: Nur weil wir gut aussehen, hei\u00dft das nicht, dass wir uns gut f\u00fchlen. Drittens: Muskeldystrophie ist nicht MS.<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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WENN IHRE LGMD MORGEN \"GEHEILT\" WERDEN K\u00d6NNTE, WAS W\u00dcRDEN SIE ALS ERSTES TUN?<\/span><\/span><\/strong><\/div>\n<\/div>\n
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Tanzen, wie ich es fr\u00fcher getan habe! Dann in allen Nationalparks wandern und viele tolle Fotos machen. Dann einen Marathon laufen oder einen Hindernislauf machen.<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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Wenn Sie weitere \"LGMD Spotlight-Interviews\" lesen oder sich f\u00fcr ein Interview zur Verf\u00fcgung stellen m\u00f6chten, besuchen Sie bitte unsere Website unter: https:\/\/www.lgmd-info.org\/spotlight-interviews <\/span><\/span><\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"

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