{"id":411,"date":"2015-01-30T21:57:44","date_gmt":"2015-01-31T03:57:44","guid":{"rendered":"http:\/\/mainstay-bg.com\/wp\/?p=136"},"modified":"2015-01-30T21:57:44","modified_gmt":"2015-01-31T03:57:44","slug":"136","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/de\/individuals-with-lgmd-interviews\/2015\/01\/30\/136\/","title":{"rendered":"EINZELPERSON MIT LGMD: Carol"},"content":{"rendered":"

01\/30\/2015\"c1\"<\/a><\/p>\n

NAME:<\/strong> Carol<\/p>\n

AGE<\/strong>: 53<\/p>\n

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

LGMD Unter-Typ<\/strong>: LGMD 2A \/ Kalpainopathie<\/p>\n

IN WELCHEM ALTER WURDE BEI IHNEN DIE DIAGNOSE GESTELLT?<\/b>:<\/p>\n

Bei mir wurde LGMD im Alter von 9 Jahren diagnostiziert, aber die genetische Best\u00e4tigung f\u00fcr LGMD2A erhielt ich erst im Alter von 51 Jahren.<\/p>\n

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

Als Kind hatte ich die Tendenz, auf den Zehen zu laufen. Als ich 9 Jahre alt war, konnte ich aufgrund von Kontrakturen meine Fersen beim Stehen nicht mehr auf den Boden stellen. Ich begann, eine Art \"Watschelgang\" zu entwickeln und hatte auch Schwierigkeiten beim Laufen und Treppensteigen.<\/p>\n

HABEN SIE ANDERE FAMILIENMITGLIEDER, DIE L<\/b>GMD: <\/b><\/p>\n

Nein, ich bin der einzige, der uns bekannt ist.<\/p>\n

WAS SIND IHRER MEINUNG NACH DIE GR\u00d6SSTEN HERAUSFORDERUNGEN IM LEBEN MIT <\/b>LGMD<\/b>:<\/p>\n

Der st\u00e4ndige Umgang mit dem Fortschreiten dieser Krankheit ist immer eine Herausforderung. Eine der gr\u00f6\u00dften Herausforderungen ist jedoch, dass ich bei den meisten Aktivit\u00e4ten des t\u00e4glichen Lebens auf andere angewiesen bin. Ich brauche jemanden, der mir hilft, mich anzuziehen, auf die Toilette zu gehen, zu baden, usw. Es ist sehr schwer, seine Unabh\u00e4ngigkeit zu verlieren!<\/p>\n

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

Ich wurde 2000-2001 vom Rehab Institute of Chicago (RIC) zur \"Behinderten Wasserskil\u00e4uferin des Jahres\" ernannt. Aber um ehrlich zu sein, ist meine gr\u00f6\u00dfte Leistung, dass ich trotz der Herausforderungen, denen ich aufgrund meiner LGMD-Diagnose t\u00e4glich begegne, einen produktiven und aktiven Lebensstil f\u00fchre. Ich habe mehr als 20 Jahre lang als Ergotherapeutin gearbeitet, bin gl\u00fccklich verheiratet und engagiere mich sehr in meiner Kirche und Gemeinde.<\/p>\n

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

LGMD hat mich als Person st\u00e4rker gemacht, obwohl ich k\u00f6rperlich schw\u00e4cher bin. Das Leben mit LGMD hat mir geholfen, die Tatsache zu erkennen und zu akzeptieren, dass jeder Mensch Herausforderungen in seinem Leben hat. Leider ist meine LGMD offensichtlicher oder sichtbarer... aber es hat mir auch geholfen zu erkennen, dass wir alle besondere Gaben oder Eigenschaften haben, die die Herausforderungen mehr als wettmachen. Ich habe gelernt, wie wichtig es ist, mich auf die Dinge zu konzentrieren und zu sch\u00e4tzen, die ich tun KANN, anstatt mich mit den Dingen aufzuhalten, die ich nicht tun kann. Das hat mich auch in die Lage versetzt, den Segen in meinem Leben zu finden und selbst die kleinsten Geschenke zu sch\u00e4tzen. Durch all das bin ich zu einem F\u00fcrsprecher und Vorbild f\u00fcr viele geworden, die mit einer Behinderung oder einer Herausforderung in ihrem Leben zu k\u00e4mpfen haben... und das liegt zum Teil an meiner LGMD.<\/p>\n

WAS SOLL DIE WELT \u00dcBER SIE ERFAHREN?<\/b> LGMD<\/b>:<\/p>\n

Derzeit gibt es KEINE Behandlung oder Heilung f\u00fcr LGMD. Die unerbittliche Natur dieser seltenen Krankheit l\u00e4sst uns immer schw\u00e4cher werden...., selbst wenn man denkt, dass es unm\u00f6glich ist, noch schw\u00e4cher zu werden! In der Vergangenheit wurden f\u00fcr LGMD deutlich weniger Forschungsgelder bereitgestellt als f\u00fcr andere Formen der Muskeldystrophie, so dass weniger Forscher daran arbeiten, die Krankheit zu verstehen und eine Heilung zu finden. Das muss sich \u00e4ndern! Wir brauchen mehr Mittel und mehr Forschung, um eine Heilung und Behandlung f\u00fcr alle Formen von LGMD zu finden.<\/p>\n

WENN IHRE LGMD MORGEN \"GEHEILT\" WERDEN K\u00d6NNTE, WAS W\u00dcRDEN SIE ALS ERSTES TUN WOLLEN?<\/b>: Ich w\u00fcrde am liebsten auf meinen Mann zugehen und ihn ganz fest in die Arme nehmen und ihn umarmen! Dann w\u00fcrde ich an einem Sandstrand laufen.<\/p>","protected":false},"excerpt":{"rendered":"

01\/30\/2015 NAME: Carol AGE: 53 COUNTRY: United States LGMD Sub-Type: […]<\/p>","protected":false},"author":1,"featured_media":254,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,16],"class_list":["post-411","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","tag-united-states"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Carol<\/title>\n<meta name=\"description\" content=\"Carol, who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares her 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\/01\/30\/136\/\" \/>\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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