{"id":418,"date":"2015-03-01T16:17:22","date_gmt":"2015-03-01T22:17:22","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=303"},"modified":"2015-03-01T16:17:22","modified_gmt":"2015-03-01T22:17:22","slug":"julianna","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/de\/individuals-with-lgmd-interviews\/2015\/03\/01\/julianna\/","title":{"rendered":"EINZELPERSON MIT LGMD: Julianna"},"content":{"rendered":"

03\/01\/2015:<\/p>\n

NAME: Julianna ALTER: 24\"LGMD2B<\/a>
\nLAND: Vereinigte Staaten
\nLGMD Unter-Typ: LGMD2B<\/p>\n

\n

IN WELCHEM ALTER WURDE BEI IHNEN DIE DIAGNOSE GESTELLT?
\nDie ersten Symptome traten bei mir im Alter von 16 Jahren auf, aber die Diagnose wurde erst im Alter von 22 Jahren gestellt.<\/p>\n

WAS WAREN IHRE ERSTEN SYMPTOME?
\nMein erstes Symptom waren gespannte Sehnen. Mein Arzt hat mich zur Physiotherapie geschickt, aber das hat nicht viel geholfen. Danach fanden wir heraus, dass es am besten w\u00e4re, meine Achillessehnen verl\u00e4ngern zu lassen. Ich wurde operiert und musste zwei Monate lang einen Gips tragen, und zwar f\u00fcr jedes Bein einzeln. Als ich mich erholte und wieder mit der Physiotherapie begann, stellte mein Physiotherapeut fest, dass ich nicht wieder an Kraft gewann. Er schickte mich f\u00fcr weitere Tests zu einem Neurologen.<\/p>\n

HABEN SIE ANDERE FAMILIENMITGLIEDER, die an LGMD leiden: nein<\/p>\n

WAS SIND F\u00dcR SIE DIE GR\u00d6SSTEN HERAUSFORDERUNGEN IM LEBEN MIT LGMD:
\nIch finde, die gr\u00f6\u00dfte Herausforderung im Leben mit LGMD ist, dass die Menschen es schwer haben, sie zu verstehen. Es ist nicht einfach, jemandem LGMD zu beschreiben. Viele Leute denken, dass ich \u00fcbertreibe oder sogar l\u00fcge, wenn ich sage, dass ich diese Krankheit habe. Da ich immer noch mobil bin, glauben sie nicht, dass ich irgendwelche Probleme habe. Ich w\u00fcnschte, die Menschen w\u00e4ren offener daf\u00fcr, mehr \u00fcber diese Krankheiten zu erfahren und zu verstehen, wie schwierig es ist.<\/p>\n

WAS IST IHRE GR\u00d6SSTE ERRUNGENSCHAFT:
\nMeine gr\u00f6\u00dfte Errungenschaft war der Abschluss des Colleges. Ich jonglierte mit Schularbeiten und medizinischen Tests, die ich durchf\u00fchren lie\u00df. Es war manchmal schwierig, damit Schritt zu halten, aber ich habe es geschafft, mich durchzuk\u00e4mpfen und mich in Schulorganisationen zu engagieren. Ich wurde Mitglied von Gamma Sigma Sigma (einer Service-Schwesternschaft) und war Vorsitzende des Veranstaltungsrats der United Students Government. Ich hatte die M\u00f6glichkeit, Veranstaltungen zu planen, z. B. einen angesehenen Redner und ein Konzert. Der G\u00fcrtel hat mich nicht davon abgehalten, das zu tun, was ich wirklich wollte. Mit dem Diplom in der Hand \u00fcber die B\u00fchne zu gehen, war ein Gef\u00fchl, das ich nie vergessen werde.<\/p>\n

WIE HAT LGMD SIE ZU DER PERSON GEMACHT, DIE SIE HEUTE SIND?
\nLGMD hat mich gelehrt, mehr Verst\u00e4ndnis f\u00fcr andere und ihre Geschichten zu haben. Jeder hat eine Geschichte, die wir nicht kennen. Ich habe auch viel \u00fcber mich selbst gelernt. Ich habe gelernt, was ich trotz kleinerer R\u00fcckschl\u00e4ge erreichen kann. Ein Sinn f\u00fcr Humor ist definitiv ein Muss, um die schweren Zeiten zu \u00fcberstehen. Ich habe gelernt, geduldig zu sein und die Tatsache zu akzeptieren, dass jeder eine helfende Hand braucht!<\/p>\n

WAS SOLL DIE WELT \u00dcBER LGMD WISSEN?
\nIch m\u00f6chte, dass die Menschen wissen: Nur weil man es nicht sehen kann, hei\u00dft das nicht, dass es nicht da ist! Versuchen Sie, geduldig zu sein und Verst\u00e4ndnis f\u00fcr Menschen aufzubringen, die Ihnen diese Krankheit erkl\u00e4ren. Es ist f\u00fcr uns genauso schwer zu erkl\u00e4ren, wie es f\u00fcr Sie zu verstehen ist.<\/p>\n

WENN IHRE LGMD MORGEN \"GEHEILT\" WERDEN K\u00d6NNTE, WAS W\u00c4RE DAS ERSTE, WAS SIE TUN W\u00dcRDEN?
\nDas erste, was ich mir w\u00fcnschen w\u00fcrde, w\u00e4re eine Reise ohne all die damit verbundenen Schwierigkeiten. Ich w\u00fcrde gerne an den Strand gehen und schwimmen, ohne Hilfe zu brauchen. Es w\u00e4re sch\u00f6n, dorthin zu gehen, wohin ich will, ohne jedes kleine Detail im Voraus planen zu m\u00fcssen; einfach keine Sorgen machen und eine gute Zeit haben!<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"

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