{"id":1618,"date":"2017-10-16T19:18:11","date_gmt":"2017-10-17T00:18:11","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1618"},"modified":"2017-10-16T19:18:11","modified_gmt":"2017-10-17T00:18:11","slug":"vicki","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2017\/10\/16\/vicki\/","title":{"rendered":"INDIVIDUO CON LGMD: Vicki"},"content":{"rendered":"<p><span style=\"color: #000000;\"><strong>LGMD \"ENTREVISTA EN PRIMER PLANO\"<\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Nombre<\/strong><\/span>:<span style=\"color: #000000;\">\u00a0 Vicki \u00a0\u00a0<strong>Edad<\/strong>: 44 a\u00f1os<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2017\/10\/LGMD2A-Vicki-.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1617 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\/10\/LGMD2A-Vicki--300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Pa\u00eds<\/strong>:  Canad\u00e1<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Subtipo LGMD<\/strong>:  LGMD2A \/ Calpainopat\u00eda<\/span><!--more--><\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"color: #000000;\"><strong>\u00bfA qu\u00e9 edad le diagnosticaron<\/strong>:\u00a0<\/span><\/p>\n<p><span style=\"color: #000000;\">Me lo diagnosticaron a los 22 a\u00f1os.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>\u00bfCu\u00e1les fueron sus primeros s\u00edntomas?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">Ten\u00eda dificultades para subir escaleras.  El m\u00e9dico me dijo que los tendones de mis tobillos eran cortos, entonces me envi\u00f3 a un neur\u00f3logo para una segunda opini\u00f3n para ver si hab\u00eda una condici\u00f3n subyacente en cuanto a <\/span>camino<span style=\"color: #000000;\"> eran cortas.  Mi neur\u00f3logo me envi\u00f3 a hacerme una biopsia muscular a Montreal.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>\u00bfTiene otros familiares que padezcan LGMD?\u00a0 <\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\">No, soy la \u00fanica persona con LGMD en mi familia.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>\u00bfCu\u00e1les crees que son los mayores retos de vivir con LGMD?<\/strong>:\u00a0<\/span><\/p>\n<p><span style=\"color: #000000;\">Son muchos los retos a los que me enfrento: mantenerme independiente solo en casa y seguir activo en mi comunidad y con mis amigos.  Cuando planeo ir a un sitio nuevo, es todo un reto.  Tengo que asegurarme de que es accesible para una silla de ruedas y preguntar por los aseos.  Tambi\u00e9n es dif\u00edcil mantener una actitud positiva cuando no puedes realizar una tarea normal, ir a un sitio al que quieres ir o simplemente ver a otros que se mueven con tanta facilidad en p\u00fablico.\u00a0<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>\u00bfCu\u00e1l es su mayor logro?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">Mi familia es mi primer gran logro: mi marido, Dean, y nuestro hijo, Tyler.  Ellos hacen que mi vida merezca la pena; me hacen sentir que puedo hacer cualquier cosa.  Me siento muy afortunada.  Tambi\u00e9n estoy muy orgullosa de mi recaudaci\u00f3n de fondos para MD.  En el <\/span>pasado<span style=\"color: #000000;\">He organizado una subasta anual, subastas online en FB, ventas de garaje, rifas, etc.  Mi \u00faltima idea ha sido hacer y vender adornos de fieltro.  Empec\u00e9 a hacerlos en enero de 2016.  Dise\u00f1o un patr\u00f3n, lo recorto en fieltro, los coso a mano y luego los comercializo en Facebook. Tienen su propia p\u00e1gina de FB: \"Adornos hechos a mano de Vicki para MD\".  Mi marido y yo hemos donado todos los suministros para hacerlos, incluso he conseguido tarjetas de visita.  TODOS los beneficios de la venta de los adornos van a MD Canad\u00e1 cada a\u00f1o en junio para nuestra Caminata por la Distrofia Muscular.  Desde que empec\u00e9, he vendido unos $4000 adornos.  Mi objetivo de recaudaci\u00f3n de fondos para la marcha en favor de MD ha sido de $6000 durante los \u00faltimos a\u00f1os.  Siempre encuentro la manera de superarlo.<\/span><\/p>\n<p><span style=\"color: #000000;\">Mi marido y yo empezamos un r\u00e9gimen de alimentaci\u00f3n saludable en marzo.  Los dos nos hemos vuelto m\u00e1s ligeros y sanos gracias a ello.  Pude dejar de tomar los tres medicamentos que tomaba para la inflamaci\u00f3n, el dolor y la hipertensi\u00f3n.  Nos sentimos muy bien y me encanta correr la voz al respecto.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>\u00bfC\u00f3mo le ha influido la LGMD para convertirse en la persona que es hoy?\u00a0 <\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\">Cada d\u00eda aprendo m\u00e1s sobre m\u00ed misma.  Mis retos y experiencias pasadas me han hecho aprender muchas cosas sobre m\u00ed misma.  He aprendido a quererme por lo que soy y no por lo que puedo o no puedo hacer.  Me he convertido en una persona fuerte y segura de s\u00ed misma.  Me he dado cuenta de que soy quien soy y de que la silla de ruedas no me define.  Tambi\u00e9n pertenezco a un grupo local de discapacitados.  Cada primavera vamos a los institutos y hablamos de c\u00f3mo se vive con una discapacidad y de c\u00f3mo se puede ayudar a las personas con discapacidad.  Gracias a ello he mejorado mucho mi oratoria.\u00a0<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>\u00bfQu\u00e9 quiere que el mundo sepa sobre la LGMD?<\/strong>:\u00a0<\/span><\/p>\n<p><span style=\"color: #000000;\">Es poco frecuente, pero tambi\u00e9n es una discapacidad com\u00fan.  A algunos nos gusta que nos echen una mano, a otros hacerlo nosotros mismos por dif\u00edcil que sea.  Cada persona es diferente.  Pregunta antes de ayudar a alguien y nunca te dejes desanimar por alguien con una actitud o personalidad negativa.  Yo siempre sonr\u00edo porque s\u00e9 lo que tengo en la vida y la LGMD no puede quitarme la sonrisa.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Si su LGMD pudiera \"curarse\" ma\u00f1ana, \u00bfqu\u00e9 ser\u00eda lo primero que desear\u00eda hacer?<\/strong>:\u00a0<\/span><\/p>\n<p><span style=\"color: #000000;\">Probablemente hay muchas cosas que har\u00eda: viajar, nadar, correr, ir de compras por mi cuenta, trabajar, hacer ejercicio, visitar las casas de mis amigos con escaleras, entrar y salir del <\/span>ba\u00f1era<span style=\"color: #000000;\">Muchas de estas cosas las puedo hacer ahora, pero modificadas.  Estar\u00eda bien hacer estas cosas sin pensar, de una forma m\u00e1s despreocupada.<\/span><\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"color: #000000;\">* Para leer m\u00e1s \"LGMD Spotlight Interviews\" o presentarse voluntario para una pr\u00f3xima entrevista, visite nuestro sitio web. <\/span>en <span style=\"color: #000000;\"><a href=\"https:\/\/www.lgmd-info.org\/es\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/span><\/p>\n<p>&nbsp;<\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name:\u00a0 Vicki \u00a0\u00a0Age: 44 yrs. old Country: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1617,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[38,82],"class_list":["post-1618","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-canada","tag-lgmd2a-calpainopathy"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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