{"id":598,"date":"2015-04-14T15:10:47","date_gmt":"2015-04-14T20:10:47","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=598"},"modified":"2015-04-14T15:10:47","modified_gmt":"2015-04-14T20:10:47","slug":"freddy","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/de\/individuals-with-lgmd-interviews\/2015\/04\/14\/freddy\/","title":{"rendered":"EINZELPERSON MIT LGMD: Freddy"},"content":{"rendered":"

04\/14\/2015<\/p>\n

NAME<\/strong>: Freddy \u00a0\u00a0AGE<\/strong>: 49 Yrs. Alt\"LGMD2A<\/a><\/p>\n

LAND<\/strong>: D\u00e4nemark<\/p>\n

LGMD Unter-Typ<\/strong>: LGMD2A - Kalpainopathie<\/p>\n

\u00a0<\/strong><\/p>\n

IN WELCHEM ALTER WURDEN SIE DIAGNOSTIZIERT?<\/strong>:<\/p>\n

Bei mir wurde die LGMD erstmals im Alter von 29 Jahren diagnostiziert. Um mein 34.th<\/sup> \u00a0Geburtstag erhielt ich die Best\u00e4tigung meiner LGMD2A-Diagnose.<\/p>\n

WAS WAREN IHRE ERSTEN SYMPTOME?<\/strong><\/p>\n

Ich hatte beim Gehen einen steifen Nacken und hatte Probleme, Gegenst\u00e4nde vom Boden aufzuheben. Mein rechter Arm lie\u00df sich nicht beugen. Au\u00dferdem litt ich unter M\u00fcdigkeit.<\/p>\n

HABEN SIE ANDERE FAMILIENMITGLIEDER, DIE AN LGMD LEIDEN: <\/strong><\/p>\n

Nein, ich bin die einzige Person in meiner Familie mit dieser Diagnose.<\/p>\n

WAS IST IHRER MEINUNG NACH DIE GR\u00d6SSTE HERAUSFORDERUNG IM LEBEN MIT LGMD<\/strong>:<\/p>\n

Ich habe M\u00fche, genug Energie zu haben, um die Dinge zu tun, die ich tags\u00fcber tun will und muss. Ich versuche, meinen Tag im Voraus zu planen, damit ich wei\u00df, was und wie ich meine Energie w\u00e4hrend des Tages einsetzen kann. Unerwartete Dinge oder Hausarbeiten sind manchmal ein Problem.<\/p>\n

Die langen Winter sind auch eine Herausforderung. Im Winter bleibe ich so oft wie m\u00f6glich drinnen. Ich gehe nur raus, wenn ich wirklich muss. Mein Sohn versteht das, aber es ist nicht immer sch\u00f6n f\u00fcr ihn, dass wir im Winter nicht drau\u00dfen spielen oder mehr Zeit im Freien verbringen k\u00f6nnen. Bei Frost oder Schnee bleibe ich noch mehr drinnen, weil ich Angst habe, zu fallen.<\/p>\n

Wegen der LGMD scheine ich manchmal ein kurzes Temperament zu haben...?<\/p>\n

WAS IST IHRE GR\u00d6SSTE ERRUNGENSCHAFT?<\/strong>:<\/p>\n

Eine meiner gr\u00f6\u00dften Errungenschaften ist, dass ich vor 15 Jahren von Holland nach D\u00e4nemark gezogen bin. Ich habe eine nette Frau und einen Sohn, der 7 Jahre alt ist (fast 8). Ich habe auch einen Job, bei dem ich 20 Stunden pro Woche arbeiten kann. (D\u00e4nemark versucht, den Behinderten zu helfen, wo es nur geht.)<\/p>\n

WIE HAT LGMD SIE ZU DER PERSON GEMACHT, DIE SIE HEUTE SIND:<\/strong><\/p>\n

Ich kann immer noch gehen, und mein Arzt hat mir gesagt, dass ich das f\u00fcr immer tun kann J, aber manchmal bin ich ein bisschen instabil und gehe \"seltsam\".<\/p>\n

Ich muss meine Tage planen, meine Energie einteilen, und wenn es etwas anderes gibt, wie einen Termin, muss ich das Tage im Voraus wissen. Ansonsten nehme ich es, wie es kommt, einen Tag nach dem anderen.<\/p>\n

WAS SOLL DIE WELT \u00dcBER LGMD WISSEN?<\/strong>:<\/p>\n

Ich m\u00f6chte, dass die Welt erf\u00e4hrt, dass es die Krankheit Gliederg\u00fcrtelmuskeldystrophie (LGMD) gibt und dass sie eine seltene Krankheit ist. Die Form von LGMD, die ich habe - LGMD Typ 2A - ist ziemlich selten! In D\u00e4nemark wird gesch\u00e4tzt, dass nur 6% der LGMD-Patienten mit LGMD2A diagnostiziert werden.<\/p>\n

WENN IHRE LGMD MORGEN \"GEHEILT\" WERDEN K\u00d6NNTE, WAS W\u00dcRDEN SIE ALS ERSTES TUN WOLLEN?<\/strong>:<\/p>\n

Laufen! Es ist schon viele Jahre her, dass ich laufen konnte oder dass ich beim Gehen stabil war.<\/p>\n

 <\/p>","protected":false},"excerpt":{"rendered":"

04\/14\/2015 NAME:\u00a0 Freddy \u00a0\u00a0AGE: 49 Yrs. Old COUNTRY:\u00a0 Denmark LGMD […]<\/p>","protected":false},"author":1,"featured_media":599,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[37,15],"class_list":["post-598","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-denmark","tag-lgmd2a"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Freddy<\/title>\n<meta name=\"description\" content=\"Freddy, who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares his experience in living with this progressive neuro-muscular disease.\" \/>\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\/2015\/04\/14\/freddy\/\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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