{"id":1341,"date":"2016-09-29T12:26:02","date_gmt":"2016-09-29T17:26:02","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1341"},"modified":"2016-09-29T12:26:02","modified_gmt":"2016-09-29T17:26:02","slug":"michele","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/de\/individuals-with-lgmd-interviews\/2016\/09\/29\/michele\/","title":{"rendered":"EINZELPERSON MIT LGMD: Michele"},"content":{"rendered":"<p>LGMD \"SPOTLIGHT INTERVIEW\"<\/p>\n<p>&nbsp;<\/p>\n<p>NAME:  Michele \u00a0\u00a0<strong>AGE<\/strong>: 52 Yrs. Alt<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2016\/09\/LGMD2A-Michele-W.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1340 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\/09\/LGMD2A-Michele-W-300x169.png\" alt=\"lgmd2a-michele-w\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>LAND<\/strong>:  Vereinigte Staaten<\/p>\n<p><strong>LGMD Unter-Typ<\/strong>:   LGMD2A - Kalpainopathie<\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p><strong>IN WELCHEM ALTER WURDEN SIE DIAGNOSTIZIERT?<\/strong>:<\/p>\n<p>Bei mir wurde im Alter von 25 Jahren zun\u00e4chst eine nicht n\u00e4her bezeichnete Form der Muskeldystrophie diagnostiziert.  Die Best\u00e4tigung meiner LGMD2A-Diagnose erhielt ich im Alter von 43 Jahren.<\/p>\n<p><strong>WAS WAREN IHRE ERSTEN SYMPTOME?<\/strong><\/p>\n<p>In meinen sp\u00e4ten Teenagerjahren entwickelte ich beim Gehen einen unbeholfenen Watschelgang, und in meinen fr\u00fchen 20ern begann ich zu hinken.<\/p>\n<p><strong>HABEN SIE ANDERE FAMILIENMITGLIEDER, DIE AN LGMD LEIDEN: <\/strong><\/p>\n<p>Ja, ein Geschwisterteil hat LGMD2A, das andere nicht.<\/p>\n<p><strong>WAS IST IHRER MEINUNG NACH DIE GR\u00d6SSTE HERAUSFORDERUNG IM LEBEN MIT LGMD<\/strong>:<\/p>\n<p>Um es ganz offen zu sagen: Das Schlimmste ist der Umgang mit \u00f6ffentlichen Toiletten, weil der Transfer in den\/aus dem Rollstuhl k\u00f6rperlich schwierig ist und die Toiletten nicht immer angemessen eingerichtet sind, so dass ich mir immer Sorgen machen muss, ob ich unterwegs Wasser oder Kaffee trinken kann.  Manchmal habe ich das Gef\u00fchl, dass sich mein Leben um das Fl\u00fcssigkeitsmanagement dreht!<\/p>\n<p><strong>WAS IST IHRE GR\u00d6SSTE ERRUNGENSCHAFT?<\/strong>:<\/p>\n<p>Beruflich ist meine gr\u00f6\u00dfte Errungenschaft die Beteiligung an der Gr\u00fcndung und Leitung der Coalition to Cure Calpain 3 (C3), einer gemeinn\u00fctzigen Gruppe, die sich auf die Finanzierung von Forschungsarbeiten mit hohem Potenzial zur Heilung von LGMD2A (auch bekannt als Calpainopathie) und die Aufkl\u00e4rung der weltweiten Gemeinschaft \u00fcber diese Krankheit konzentriert.<\/p>\n<p>Meine neueste Errungenschaft ist das L\u00f6sen eines Mini-Kreuzwortr\u00e4tsels der New York Times in 15 Sekunden,<br \/>\n<strong>WIE HAT LGMD SIE ZU DER PERSON GEMACHT, DIE SIE HEUTE SIND:<\/strong><\/p>\n<p>Positiv ist, dass ich dadurch einf\u00fchlsamer geworden bin und meinen Kindern zeigen kann, dass es wichtig ist, etwas zu unternehmen, wenn man mit dem Zustand der Dinge unzufrieden ist.  Beschwert euch nicht, sondern setzt euch f\u00fcr den Wandel ein.<\/p>\n<p>Auf der anderen Seite musste ich mein t\u00e4gliches Leben anpassen, da sich meine Mobilit\u00e4t verschlechtert hat, und obwohl ich das Beste aus meinem Leben mache und im Allgemeinen gl\u00fccklich und produktiv bin, gibt es nat\u00fcrlich auch Herausforderungen, und das kann k\u00f6rperlich und emotional anstrengend werden.<\/p>\n<p><strong>WAS SOLL DIE WELT \u00dcBER LGMD WISSEN?<\/strong>:<\/p>\n<p>Wir brauchen mehr Mittel f\u00fcr die Forschung und mehr Wissenschaftler, die sich mit der Suche nach einer Behandlung oder Heilung besch\u00e4ftigen.<\/p>\n<p><strong>WENN IHRE LGMD MORGEN \"GEHEILT\" WERDEN K\u00d6NNTE, WAS W\u00dcRDEN SIE ALS ERSTES TUN WOLLEN?<\/strong>:<\/p>\n<p>Mit dem Fahrrad (vorzugsweise ein rosa Schwinn mit einem Korb am Lenker und einer Thermoskanne Kaffee) zum Strand fahren und mit meiner Familie am Steg entlang spazieren.<\/p>\n<p>&nbsp;<\/p>\n<p>Wenn Sie weitere \"LGMD Spotlight-Interviews\" lesen oder sich f\u00fcr ein Interview zur Verf\u00fcgung stellen m\u00f6chten, besuchen Sie bitte unsere Website unter: https:\/\/www.lgmd-info.org\/spotlight-interviews<\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSPOTLIGHT INTERVIEW\u201d &nbsp; NAME:\u00a0 Michele \u00a0\u00a0AGE: 52 Yrs. Old [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1340,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[15,16],"class_list":["post-1341","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a","tag-united-states"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>INDIVIDUAL WITH LGMD: Michele - 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\/2016\/09\/29\/michele\/\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Michele - LGMD Awareness Foundation\" \/>\n<meta property=\"og:description\" content=\"LGMD \u201cSPOTLIGHT INTERVIEW\u201d &nbsp; NAME:\u00a0 Michele \u00a0\u00a0AGE: 52 Yrs. 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