{"id":3464,"date":"2020-08-24T19:35:11","date_gmt":"2020-08-25T00:35:11","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3464"},"modified":"2024-02-09T14:24:34","modified_gmt":"2024-02-09T14:24:34","slug":"dylan","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/de\/individuals-with-lgmd-interviews\/2020\/08\/24\/dylan\/","title":{"rendered":"EINZELPERSON MIT LGMD: Dylan"},"content":{"rendered":"
\"\"<\/figure><\/div>\n\n\n\n

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

Name<\/strong>: Dylan                                  Alter<\/strong>: 28 Jahre alt<\/p>\n\n\n\n

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

LGMD Unter-Typ<\/strong>: LGMD 2J \/ R10 Titin-bezogen<\/p>\n\n\n\n

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

Die Diagnose wurde bei mir im Alter von 23 Jahren gestellt.<\/p>\n\n\n\n

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

Ich merkte, dass mir \"normale\" Dinge immer schwerer fielen - Treppensteigen, Aufstehen nach dem Sitzen auf dem Boden, Springen und Hocken. Ich hatte st\u00e4ndig Muskelerm\u00fcdung und st\u00fcrzte wahllos. Nachdem ich nicht mehr laufen konnte und die St\u00fcrze immer h\u00e4ufiger wurden, wussten wir, dass etwas nicht stimmte.<\/p>\n\n\n\n

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

N\u00f6. Ich bin der Einzige!<\/p>\n\n\n\n

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

Es ist eine grausame Krankheit, denn sie raubt uns nicht nur auf nat\u00fcrliche Weise Kraft und Beweglichkeit, sondern versucht auch, uns die Hoffnung und die Kontrolle \u00fcber unser eigenes Leben zu nehmen. W\u00e4hrend sich unser K\u00f6rper t\u00e4glich verschlechtert und keine Behandlung oder Heilung in Sicht ist, kann man sich leicht geschlagen und vernachl\u00e4ssigt f\u00fchlen. Ich glaube, dass dies eine der gr\u00f6\u00dften Herausforderungen ist - den Kopf \u00fcber Wasser zu halten. Deshalb ist es so besonders wichtig, positiv zu bleiben und das Leben so gut wie m\u00f6glich zu leben, egal wie das aussieht!<\/p>\n\n\n\n

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

Ich hatte das unglaubliche Gl\u00fcck, das ganze Land (44 Staaten) zu bereisen und mit einigen der besten Jungs der Welt Musik zu machen. Ich wei\u00df nicht, wie lange ich das noch tun kann, aber es ist ein wahr gewordener Traum. Au\u00dferdem bin ich ein stolzer Absolvent der Texas Christian University (Go Frogs) und war als Junge Landesmeister im Schach. Ich glaube auch, dass ich ein ziemlich guter Hundevater bin!<\/p>\n\n\n\n

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

Ich lerne jeden Tag etwas Neues. Ich habe in so kurzer Zeit die Perspektive eines ganzen Lebens gewonnen. Ich bin ein besserer Probleml\u00f6ser geworden. Ich bin viel geduldiger mit mir selbst und anderen. Ich sch\u00e4tze jeden Augenblick und jeden einzelnen Schritt, der mir noch bleibt. Ich l\u00e4chle mehr, schaue in die Wolken und behandle jetzt jeden freundlich. Ich versuche, der Held von jemandem zu sein. Abgesehen davon, dass ich an LGMD leide, bin ich der gl\u00fccklichste Mensch auf Erden und habe die beste Familie und die besten Freunde, die man sich w\u00fcnschen kann.<\/p>\n\n\n\n

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

Dass wir Menschen mit Zielen, Hoffnungen, Leidenschaften und Gef\u00fchlen sind - genau wie alle anderen auch. Viele von uns waren auch einmal ziemlich \"normal\". Wenn jeder w\u00fcsste, welche H\u00fcrden und Hindernisse jemand mit LGMD \u00fcberwinden muss, nur um seinen normalen Alltag zu bew\u00e4ltigen, w\u00fcrden die Menschen verstehen, wie z\u00e4h und widerstandsf\u00e4hig unsere Gemeinschaft ist. Sie w\u00fcrden erkennen, dass dies eine Gemeinschaft und eine Krankheit ist, f\u00fcr die es sich zu k\u00e4mpfen lohnt. Seien Sie also ein F\u00fcrsprecher, w\u00e4hrend Forscher und Wissenschaftler diese mysteri\u00f6sen Krankheiten ergr\u00fcnden!<\/p>\n\n\n\n

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

Ich w\u00fcrde mit meinem Hund im Garten herumlaufen, mit einer netten und h\u00fcbschen Dame tanzen, mit meinen Freunden Baseball spielen und wahrscheinlich einen Berg besteigen, einfach so!<\/p>\n\n\n\n

Wenn Sie weitere \"LGMD Spotlight Interviews\" lesen oder sich f\u00fcr ein Interview zur Verf\u00fcgung stellen m\u00f6chten, besuchen Sie bitte unsere Website: http:\/\/lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

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