{"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\/es\/individuals-with-lgmd-interviews\/2016\/09\/29\/michele\/","title":{"rendered":"INDIVIDUO CON LGMD: Michele"},"content":{"rendered":"<p>LGMD \"ENTREVISTA EN PRIMER PLANO\"<\/p>\n<p>&nbsp;<\/p>\n<p>NOMBRE  Michele \u00a0\u00a0<strong>EDAD<\/strong>: 52 Yrs. Viejo<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>PA\u00cdS<\/strong>:  Estados Unidos<\/p>\n<p><strong>Subtipo LGMD<\/strong>:   LGMD2A - Calpainopat\u00eda<\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p><strong>A QU\u00c9 EDAD LE DIAGNOSTICARON<\/strong>:<\/p>\n<p>Me diagnosticaron inicialmente una forma no especificada de distrofia muscular a los 25 a\u00f1os.  Recib\u00ed la confirmaci\u00f3n de mi diagn\u00f3stico de LGMD2A a los 43 a\u00f1os.<\/p>\n<p><strong>CU\u00c1LES FUERON SUS PRIMEROS S\u00cdNTOMAS:<\/strong><\/p>\n<p>Al final de la adolescencia empec\u00e9 a caminar con dificultad y a principios de los 20 empec\u00e9 a cojear.<\/p>\n<p><strong>\u00bfTIENE OTROS MIEMBROS DE LA FAMILIA QUE PADEZCAN ALGODISTROFIA? <\/strong><\/p>\n<p>S\u00ed, un hermano tiene LGMD2A pero el otro no.<\/p>\n<p><strong>\u00bfCU\u00c1L CREE QUE ES EL MAYOR RETO DE VIVIR CON LGMD?<\/strong>:<\/p>\n<p>Para ser sincera, lo peor son los aseos p\u00fablicos, porque el traslado desde y hacia una silla de ruedas es f\u00edsicamente dif\u00edcil y los aseos no siempre est\u00e1n bien acondicionados, por lo que siempre me preocupa beber agua o caf\u00e9 mientras estoy fuera.  A veces tengo la sensaci\u00f3n de que mi vida gira en torno a la gesti\u00f3n de los l\u00edquidos.<\/p>\n<p><strong>\u00bfCU\u00c1L ES SU MAYOR LOGRO?<\/strong>:<\/p>\n<p>Profesionalmente, mi mayor logro es mi participaci\u00f3n en la creaci\u00f3n y gesti\u00f3n de la Coalici\u00f3n para Curar la Calpa\u00edna 3 (C3), que es un grupo sin \u00e1nimo de lucro centrado en la financiaci\u00f3n de investigaciones de alto potencial para curar la LGMD2A (tambi\u00e9n conocida como Calpainopat\u00eda),y educar a la comunidad mundial sobre la enfermedad.<\/p>\n<p>Personalmente, mi \u00faltimo logro es resolver un minicrucigrama del New York Times en 15 segundos,<br \/>\n<strong>\u00bfC\u00d3MO TE HA INFLUIDO LA ALGMD PARA CONVERTIRTE EN LA PERSONA QUE ERES HOY?<\/strong><\/p>\n<p>En el lado positivo, me ha hecho m\u00e1s emp\u00e1tica y me ha dado la oportunidad de ense\u00f1ar a mis hijos que es importante actuar cuando uno se siente frustrado con el estado de las cosas.  No te quejes; s\u00e9 un agente del cambio.<\/p>\n<p>En el lado negativo, me ha obligado a ajustar mi vida diaria a medida que mi movilidad ha ido empeorando, y aunque ciertamente aprovecho al m\u00e1ximo mi vida y en general soy feliz y productiva, sin duda presenta sus retos, y eso puede llegar a ser agotador f\u00edsica y emocionalmente.<\/p>\n<p><strong>\u00bfQU\u00c9 QUIERE QUE EL MUNDO SEPA SOBRE LA DGML?<\/strong>:<\/p>\n<p>Necesitamos m\u00e1s fondos para la investigaci\u00f3n y m\u00e1s cient\u00edficos comprometidos en la b\u00fasqueda de un tratamiento o una cura.<\/p>\n<p><strong>SI MA\u00d1ANA SE PUDIERA \"CURAR\" SU DGML, \u00bfQU\u00c9 SER\u00cdA LO PRIMERO QUE QUERR\u00cdA HACER?<\/strong>:<\/p>\n<p>Ir en bicicleta (preferiblemente una Schwinn rosa con una cesta en el manillar y un termo de caf\u00e9) a la playa y pasear por el espig\u00f3n con mi familia.<\/p>\n<p>&nbsp;<\/p>\n<p>Para leer m\u00e1s \"LGMD Spotlight Interviews\" o presentarse voluntario para una pr\u00f3xima entrevista, visite nuestro sitio web: 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\/es\/individuals-with-lgmd-interviews\/2016\/09\/29\/michele\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\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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