{"id":2781,"date":"2019-09-12T11:55:24","date_gmt":"2019-09-12T16:55:24","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2781"},"modified":"2019-09-12T11:55:24","modified_gmt":"2019-09-12T16:55:24","slug":"individual-with-lgmd-tasha-2","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/de\/uncategorized\/2019\/09\/12\/individual-with-lgmd-tasha-2\/","title":{"rendered":"Person mit LGMD: Tasha"},"content":{"rendered":"

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

\"\"<\/figure>\n\n\n\n

Name<\/strong>: Tasha              Alter<\/strong>: 46<\/p>\n\n\n\n

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

LGMD Unter-Typ<\/strong>: LGMD2L\n<\/p>\n\n\n\n

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

Die Diagnose wurde im Alter von 13 Jahren gestellt, aber ich hatte die Probleme schon seit meinem 8.\netwa im Alter von 8 Jahren. Sie sagten, es seien\nWachstumsschmerzen und dann wurden mehrere falsche Diagnosen gestellt. Im Alter von 13 Jahren wurden meine Blutwerte untersucht\nBlutwerte untersucht, und sie waren nicht in Ordnung.<\/p>\n\n\n\n

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

Ich hatte Schw\u00e4che und schreckliche Schmerzen in beiden Waden\nMuskeln nach dem Sport.<\/p>\n\n\n\n

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

Ja, mein j\u00fcngerer Bruder hat die gleiche Diagnose: LGMD2L. Er hatte einen v\u00f6llig anderen Verlauf\nund Grad der Muskelatrophie. Meine \u00e4ltere\nSchwester hat die Krankheit nicht. Meine beiden\nEltern waren Tr\u00e4ger.<\/p>\n\n\n\n

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

Meine gr\u00f6\u00dften Herausforderungen bei dieser Krankheit sind M\u00fcdigkeit und\nSchmerzen. Und dass die Menschen kein Verst\u00e4ndnis haben.<\/p>\n\n\n\n

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

Jeden Tag weiterarbeiten, arbeiten und Sport treiben.<\/p>\n\n\n\n

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

Das kommt darauf an! Es hat mich dazu gebracht, f\u00fcr mich selbst und meine Gesundheit einzutreten. Mir wurde gesagt, dass ich als Erwachsener im Rollstuhl sitzen w\u00fcrde, wenn nicht sogar noch fr\u00fcher. Mir wurde auch gesagt, ich solle meine Karriere entsprechend planen. Dann wurde mir gesagt, ich solle mit all meinen Sportarten und Aktivit\u00e4ten aufh\u00f6ren. Als 13-J\u00e4hriger hatte dies tiefgreifende Auswirkungen auf meine Kindheit, da ich viel Sport trieb und sehr gut darin war - vor allem im Fu\u00dfball. Um mich nicht verr\u00fcckt zu machen, ignorierte ich den Rat des Arztes und machte es trotzdem. Ich habe w\u00e4hrend und nach dem College Fu\u00dfball gespielt. Ich glaube, es hat mir insgesamt geholfen, was meine Einstellung und mein k\u00f6rperliches Wohlbefinden angeht. Ich hatte oft Schmerzen und Schwierigkeiten beim Gehen, aber ich glaube, dass es mir insgesamt geholfen hat, gesund zu bleiben und meine Muskeln aktiv zu halten. Ich treibe immer noch Sport und mache Aktivit\u00e4ten im Freien, aber die Erholungszeit ist l\u00e4nger. Ich bin Buchhalterin, und ich glaube, das liegt zum Teil an meinen F\u00e4higkeiten. Ich glaube, LGMD hat mich insgesamt zu einem st\u00e4rkeren Menschen gemacht. <\/p>\n\n\n\n

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

Erstens, dass, obwohl das Bewusstsein f\u00fcr MD Duchenne in den Vordergrund ger\u00fcckt wurde, dies vor allem wegen der j\u00e4hrlichen Jerry Lewis Telethons geschah. Es gibt noch viele andere Formen der Muskeldystrophie, die Menschen wie ich.... haben und die ebenfalls erforscht werden m\u00fcssen. Die Menschen leiden, und es gibt KEINE HEILUNG! Au\u00dferdem habe ich bei LGMD festgestellt, dass man nicht immer merkt, dass man eine Behinderung hat. Ich meine.... sehe v\u00f6llig normal aus, habe aber mehrere Probleme, die die Leute nicht erkennen. Da ich nicht im Rollstuhl sitze, denken manche Leute, ich t\u00e4usche es nur vor. Ich kann \u00fcberhaupt keine Treppen mehr steigen und musste schon viele Jobangebote ablehnen, weil es keinen Aufzug gab.<\/p>\n\n\n\n

Wenn Ihre LGMD morgen \"geheilt\" werden k\u00f6nnte, was\nw\u00e4re das Erste, was Sie tun w\u00fcrden, um<\/strong>:<\/p>\n\n\n\n

Ich w\u00fcrde der Welt sagen: .....<\/p>\n\n\n\n

* * * Um weitere \"LGMD Spotlight Interviews\" zu lesen oder\num sich f\u00fcr ein Interview anzumelden, besuchen Sie bitte unsere Website\nunter: https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a>  <\/p>\n\n\n\n

* * * Bitte LIKE, KOMMENTAR und TEILEN Sie diesen Beitrag, um das Bewusstsein f\u00fcr\nvon LGMD!
\n
\n<\/p>","protected":false},"excerpt":{"rendered":"

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