{"id":1446,"date":"2017-04-08T12:30:56","date_gmt":"2017-04-08T17:30:56","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1446"},"modified":"2017-04-08T12:30:56","modified_gmt":"2017-04-08T17:30:56","slug":"darlene","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2017\/04\/08\/darlene\/","title":{"rendered":"INDIVIDUO CON LGMD: Darlene"},"content":{"rendered":"<p><strong>LGMD \"ENTREVISTA EN PRIMER PLANO\"<\/strong><\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p><strong>Nombre<\/strong>:  Darlene\u00a0\u00a0\u00a0 <strong>Edad<\/strong>65 a\u00f1os<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2017\/04\/Non-Dysferlin-Miyoshi-Myopathy.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1445 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\/2017\/04\/Non-Dysferlin-Miyoshi-Myopathy-300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>Pa\u00eds<\/strong>:   Estados Unidos<\/p>\n<p><strong>Subtipo LGMD<\/strong>:    Miopat\u00eda de Miyoshi sin disferlina<\/p>\n<p>&nbsp;<\/p>\n<p><strong>\u00bfA qu\u00e9 edad le diagnosticaron<\/strong>:<\/p>\n<p>Me lo diagnosticaron a los 64 a\u00f1os.<\/p>\n<p><strong>\u00bfCu\u00e1les fueron sus primeros s\u00edntomas?<\/strong>:<\/p>\n<p>En retrospectiva, ahora me doy cuenta de que los s\u00edntomas empezaron en mis 40 a\u00f1os o incluso antes.  Siempre he sido activo, pero con el paso de los a\u00f1os, habilidades como correr, esquiar y patinar se hicieron cada vez m\u00e1s dif\u00edciles, as\u00ed que hice otras actividades como ciclismo, kettlebells, pesas y entrenamiento CrossFit.  Sobrellevaba los s\u00edntomas de Raynaud abrig\u00e1ndome m\u00e1s.  El desgaste muscular visible en mis pantorrillas a principios de los 60 inici\u00f3 mi largo viaje de un a\u00f1o hacia el diagn\u00f3stico.  Para entonces, el 80-90% de ambos m\u00fasculos gastrocnemios hab\u00eda sido sustituido por grasa.<\/p>\n<p><strong>\u00bfTiene otros familiares que padezcan LGMD?<\/strong><\/p>\n<p>No, pero dos hermanas tienen\/tuvieron diabetes juvenil.  Una muri\u00f3 de complicaciones card\u00edacas a los 53 a\u00f1os.  A la otra, que ahora tiene 58 a\u00f1os y una salud fr\u00e1gil, le implantaron un ri\u00f1\u00f3n\/p\u00e1ncreas a los 39.<\/p>\n<p><strong>\u00bfCu\u00e1les crees que son los mayores retos de vivir con LGMD?<\/strong>:<\/p>\n<p>Como copropietario de un gimnasio de CrossFit, trato constantemente de encontrar el equilibrio adecuado entre trabajar lo suficientemente duro como para desafiar y mantener fuertes y m\u00f3viles mis m\u00fasculos sanos, pero no tan duro como para destruir mis m\u00fasculos en riesgo.  Hasta ahora, el impacto de la enfermedad ha sido m\u00ednimo en mi vida: sigo vi\u00e9ndome, sinti\u00e9ndome y movi\u00e9ndome m\u00e1s joven que la media de las personas de 65 a\u00f1os.  Intento centrarme en lo que puedo hacer cada d\u00eda y recordarme a m\u00ed mismo que todo el mundo, no s\u00f3lo yo, se enfrenta a una enfermedad degenerativa progresiva llamada envejecimiento.<\/p>\n<p><strong>\u00bfCu\u00e1l es su mayor logro?<\/strong>:<\/p>\n<p>Crecer con hermanas diab\u00e9ticas me inculc\u00f3 la importancia de una buena nutrici\u00f3n y del ejercicio regular.  Entiendo que lo que me llevo a la boca importa, y que dormir bien y recuperarse del estr\u00e9s es esencial, independientemente de lo que te aqueje.  Aunque no puedo saber con certeza si los h\u00e1bitos saludables ayudan a minimizar mis s\u00edntomas, elijo creer que s\u00ed, y seguir\u00e9 siendo lo m\u00e1s proactiva posible en ese sentido.  Como entrenador, puedo modelar las excelentes pr\u00e1cticas de salud y trabajar estrechamente con nuestros miembros para que ellos mismos cosechen esos beneficios.  Me convert\u00ed en entrenador de CrossFit a los 60 a\u00f1os (tras 35 a\u00f1os de carrera como periodista) y es gratificante que otros te digan que les has ayudado a cambiar sus vidas a mejor.<\/p>\n<p><strong>\u00bfC\u00f3mo le ha influido la LGMD para convertirse en la persona que es hoy?<\/strong><\/p>\n<p>D\u00e9cadas antes de mi diagn\u00f3stico oficial, las desconcertantes limitaciones f\u00edsicas me empujaron a encontrar otras formas de ser activa y contribuir en una comunidad de atletas competitivos de resistencia al aire libre.  Ser resistente, f\u00edsicamente activa y fuerte es una parte de mi identidad que intentar\u00e9 mantener mientras pueda.  Cuento con esa mentalidad para afrontar cualquier incertidumbre que me depare el futuro.<\/p>\n<p><strong>\u00bfQu\u00e9 quiere que el mundo sepa sobre la LGMD?<\/strong>:<\/p>\n<p>La distrofia muscular es una enfermedad rara con infinitas variaciones individuales.  Y puesto que no hay cura y las empresas farmac\u00e9uticas tienen pocos incentivos econ\u00f3micos para encontrarla, el diagn\u00f3stico suele ser el final del inter\u00e9s de los profesionales sanitarios por ti.  Busca apoyo donde puedas y s\u00e9 tu propio defensor.<\/p>\n<p><strong>Si su LGMD pudiera \"curarse\" ma\u00f1ana, \u00bfqu\u00e9 ser\u00eda lo primero que desear\u00eda hacer?<\/strong>:<\/p>\n<p>Me encantar\u00eda esquiar a campo traviesa.  Vivimos en un sistema de pistas que conecta con la American Birkebeiner Ski Trail, de 54 km, y me encantar\u00eda experimentar la emoci\u00f3n de deslizarme con gracia por las colinas y valles de esta hermosa pista boscosa.<\/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: <a href=\"https:\/\/www.lgmd-info.org\/es\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSPOTLIGHT INTERVIEW\u201d \u00a0 Name:\u00a0 Darlene\u00a0\u00a0\u00a0 Age: \u00a0\u00a065 yrs. old [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1445,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[73],"class_list":["post-1446","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-non-dysferlin-miyoshi-myopathy-united-states"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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