{"id":1138,"date":"2016-01-30T12:59:17","date_gmt":"2016-01-30T18:59:17","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1138"},"modified":"2016-01-30T12:59:17","modified_gmt":"2016-01-30T18:59:17","slug":"thomas","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/de\/individuals-with-lgmd-interviews\/2016\/01\/30\/thomas\/","title":{"rendered":"EINZELPERSON MIT LGMD: Thomas"},"content":{"rendered":"<p>01\/30\/2016<\/p>\n<p><strong>LGMD \"Spotlight-Interview\"<\/strong><\/p>\n<p><strong>Name<\/strong>:  Thomas\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <strong>AG<\/strong>E: 31<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2016\/01\/LGMD2B-Thomas.png\" rel=\"attachment wp-att-1139\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1139 alignright\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27300%27%20height%3D%27169%27%20viewBox%3D%270%200%20300%20169%27%3E%3Crect%20width%3D%27300%27%20height%3D%27169%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2016\/01\/LGMD2B-Thomas-300x169.png\" alt=\"LGMD2B - Thomas\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>LAND<\/strong>: Schweiz<\/p>\n<p><strong>LGMD Unter-Typ<\/strong>: LGMD 2B \/ Miyoshi-Myopathie<\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p><strong>In welchem Alter wurde bei Ihnen die Diagnose gestellt?<\/strong>:<\/p>\n<p>Meine erste Diagnose (Biopsie) erhielt ich mit 28 Jahren, der Nachweis mit Gentest folgte ein Jahr sp\u00e4ter.<\/p>\n<p><strong>Was waren Ihre ersten Symptome?<\/strong>:<\/p>\n<p>Das ist nicht so einfach zu sagen. Jetzt wei\u00df ich, wo ich hinschauen muss, so viele Beispiele aus meiner Erinnerung kamen hoch; in meiner Kindheit hatten wir eine steil ansteigende Treppe um unser Haus herum, wo ich immer Schwierigkeiten hatte, hinaufzusteigen, weil die Stufen sehr kurz sind. Im Teenageralter begann ich mit dem Snowboarden, wobei ich nicht in der Lage war, viel Druck auf die Vorderkante des Brettes auszu\u00fcben. Als junger Erwachsener konnte ich nicht zur Musik in Diskotheken springen. Im Alter von 24 \/ 25 Jahren merkte ich, dass ich nicht in der Lage war, auf den Zehenspitzen zu stehen und meine Wadenmuskulatur eigentlich nicht vorhanden ist. In den letzten Jahren habe ich festgestellt, dass sich meine Bein- und Armmuskeln verk\u00fcrzen.<\/p>\n<p>Mit 18 sagte mir mein Arzt, dass ich zu hohe Kreatinkinase-Werte im Blut habe. Er lag bei 250 - 300 irgendwas, zu niedrig f\u00fcr bekannte Krankheiten und zu hoch, um normal zu sein. Heute wei\u00df ich, dass dies der erste medizinische Hinweis auf Miyoshi war.<\/p>\n<p><strong>Haben Sie andere Familienmitglieder, die LGMD haben?<\/strong><\/p>\n<p>Ja, meine Schwester hat auch LGMD. Ihre Symptome (Zehenspitzenstand, Kreatinkinase) sind die gleichen, aber sie scheint weniger betroffen zu sein.<\/p>\n<p><strong>Was sind f\u00fcr Sie die gr\u00f6\u00dften Herausforderungen im Leben mit LGMD?<\/strong>:<\/p>\n<p>Meiner Meinung nach besteht die gr\u00f6\u00dfte Herausforderung darin, diese Herausforderung anzunehmen! In der ersten Zeit nach der Diagnose war es schwer zu akzeptieren. Man braucht psychische St\u00e4rke, um damit umzugehen. Auch wenn man seinen Krankheitsverlauf betrachtet, sollte man die Symptome und Auswirkungen nicht \u00fcber- oder untersch\u00e4tzen. Wenn man in die Zukunft blickt, muss man die Dinge immer mit Blick auf die LGMD planen (vielleicht braucht man in 5, 7 oder 10 Jahren einen Rollstuhl).<\/p>\n<p><strong>Was ist Ihre gr\u00f6\u00dfte Errungenschaft?<\/strong>:<\/p>\n<p>Ich akzeptiere LGMD und genie\u00dfe es, Dinge zu tun, die ich in Zukunft nicht mehr tun k\u00f6nnen werde.<\/p>\n<p><strong>Wie hat LGMD Sie zu der Person gemacht, die Sie heute sind?<\/strong><\/p>\n<p>Meine Diagnose kam genau zu Beginn meines Masterstudiums. Neben meinem Bachelor- und Masterstudium (Vollzeitstudium) habe ich an den Wochenenden und in den Schulferien gearbeitet. Jetzt arbeite ich in Teilzeit und habe einen guten Grund, meine Freizeit mit meiner Frau, unseren Hunden und unserem Garten zu genie\u00dfen. Ich sch\u00e4tze mehr, was ich jetzt habe.<\/p>\n<p><strong>Was m\u00f6chten Sie der Welt \u00fcber LGMD mitteilen?<\/strong>:<\/p>\n<p>Dass es sie gibt. Ich denke, es gibt viele nicht registrierte F\u00e4lle von LGMD.<\/p>\n<p><strong>Wenn Ihre LGMD morgen \"geheilt\" werden k\u00f6nnte, was w\u00fcrden Sie als Erstes tun wollen?<\/strong>:<\/p>\n<p>Ich habe wegen Miyoshi gerade meinen F\u00fchrerschein f\u00fcr Lastwagen und Busse verloren. Es war nicht nur ein Job, um mein Studium zu finanzieren, es war auch mein Hobby. Also w\u00fcrde ich ihn zur\u00fcckbekommen und herumfahren.<\/p>\n<p>&nbsp;<\/p>\n<p>Wenn Sie weitere \"LGMD Spotlight-Interviews\" lesen oder sich f\u00fcr ein bevorstehendes Interview zur Verf\u00fcgung stellen m\u00f6chten, besuchen Sie bitte unsere Website unter: https:\/\/www.lgmd-info.org\/spotlight-interviews<\/p>\n<p>&nbsp;<\/p>","protected":false},"excerpt":{"rendered":"<p>01\/30\/2016 LGMD \u201cSpotlight interview\u201d Name:\u00a0 Thomas\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 AGE: 31 COUNTRY: Switzerland [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1139,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[23,55,58],"class_list":["post-1138","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2b","tag-miyoshi-myopathy","tag-switzerland"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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