{"id":5635,"date":"2022-02-08T04:21:00","date_gmt":"2022-02-08T04:21:00","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5635"},"modified":"2024-02-09T14:23:56","modified_gmt":"2024-02-09T14:23:56","slug":"individual-with-lgmd-john","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/de\/individuals-with-lgmd-interviews\/2022\/02\/08\/individual-with-lgmd-john\/","title":{"rendered":"EINZELPERSON MIT LGMD: John"},"content":{"rendered":"

\"<\/p>\n

Name<\/strong>: John\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Alter<\/strong>: 28 Jahre alt<\/p>\n

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

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

 <\/p>\n

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

Im Alter von 10 Jahren wurde bei mir Morbus Becker diagnostiziert. Im Alter von 11 oder 12 Jahren wurde dann bei mir eine mitochondriale Myopathie diagnostiziert. Im Jahr 2016 wurde bei mir dann LGMD diagnostiziert und 2021 wurde LGMD2J\/R10 genetisch best\u00e4tigt.<\/p>\n

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

Etwa im Alter von 5 Jahren hatte ich Schwierigkeiten, richtig zu laufen. Ich hatte enorme Wadenschmerzen, wenn ich Sport trieb, und es fiel mir schwer, mit anderen Kindern mitzuhalten.<\/p>\n

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

Mein Bruder hat auch LGMD2J.<\/p>\n

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

Die gr\u00f6\u00dften Herausforderungen sind der Verlust der F\u00e4higkeit, die Dinge zu tun, die ich liebe, sowie die Notwendigkeit, aufgrund der fortschreitenden Schw\u00e4che immer wieder neue Hobbys zu finden. Das ist schwer zu verkraften. Jetzt stelle ich auch fest, dass es schwierig oder unm\u00f6glich ist, allt\u00e4gliche Aktivit\u00e4ten ohne die Hilfe meiner wunderbaren Frau Christina selbstst\u00e4ndig zu erledigen. Leider werde ich aufgrund der Art meiner Behinderung und der Mobilit\u00e4tshilfe, die ich benutze, h\u00e4ufig diskriminiert und mir wird der Zugang zu einigen \u00f6ffentlichen Pl\u00e4tzen verwehrt.<\/p>\n

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

Ich heiratete meine wundersch\u00f6ne Frau Christina und schloss mein Studium mit einem Bachelor in Chemie ab.<\/p>\n

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

Die Krankheit hat mich zu dem gemacht, was ich heute bin: Sie hat mich herausgefordert, mir erm\u00f6glicht, andere Menschen mit Behinderungen kennenzulernen, und mich dazu gebracht, die F\u00fcrsprecherin zu sein, die ich heute bin. Dass ich in meinen k\u00f6rperlichen F\u00e4higkeiten eingeschr\u00e4nkt bin, hat mich zu einer kreativeren Probleml\u00f6serin gemacht und mich viel \u00fcber Geduld gelehrt. Die Krankheit f\u00fchlt sich manchmal wirklich an, als w\u00fcrde sie mich niederschlagen, aber es ist wichtig f\u00fcr mich, mich daran zu erinnern, dass ich im Kampf um eine echte Behandlung f\u00fcr Krankheiten wie die meine nicht allein bin.<\/p>\n

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

Ich w\u00fcnschte, es g\u00e4be ein gr\u00f6\u00dferes Bewusstsein f\u00fcr die Auswirkungen, die eine Krankheit wie LGMD auf das Leben, die psychische Gesundheit und die Lebenserwartungen eines Menschen haben kann. Ich m\u00f6chte, dass andere die Schwere des Krankheitsverlaufs erkennen, aber auch den lohnenden Kampf, den wir alle irgendwann gegen chronische und seltene Krankheiten f\u00fchren m\u00fcssen.<\/p>\n

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

Unbedingt, ich w\u00fcrde mich auf ein Dirt Bike setzen und tagelang fahren! Ich bin fr\u00fcher viel gefahren, als ich j\u00fcnger war, aber ich bin nicht mehr stark genug. Ich denke trotzdem jeden Tag daran.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5636,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,66],"tags":[78],"class_list":["post-5635","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2j","tag-lgmd2j-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: John - 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\/2022\/02\/08\/individual-with-lgmd-john\/\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: John - 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