{"id":1026,"date":"2015-09-30T07:31:34","date_gmt":"2015-09-30T12:31:34","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1026"},"modified":"2015-09-30T07:31:34","modified_gmt":"2015-09-30T12:31:34","slug":"brad","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/","title":{"rendered":"INDIVIDUO CON LGMD: Brad"},"content":{"rendered":"<p>09\/30\/2015:<\/p>\n<p><strong>Nombre<\/strong>:  Brad\u00a0 <strong>Edad<\/strong>: 51 a\u00f1os<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2015\/09\/LGMD2B-Brad.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1027 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\/2015\/09\/LGMD2B-Brad-300x169.png\" alt=\"LGMD2B - Brad\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>Pa\u00eds<\/strong>: Estados Unidos<\/p>\n<p><strong>Subtipo LGMD<\/strong>: LGMD2B\/Miopat\u00eda de Miyoshi<\/p>\n<p>&nbsp;<\/p>\n<p><strong>\u00bfA qu\u00e9 edad le diagnosticaron<\/strong>:<\/p>\n<p>Empec\u00e9 a tener s\u00edntomas a los 18 a\u00f1os. Pero no fue hasta unos 10 a\u00f1os despu\u00e9s cuando un neur\u00f3logo me dijo que ten\u00eda Miyoshi.  Luego tuve que esperar otros 10 a\u00f1os a que se descubriera el gen antes de que hubiera una forma de confirmar que eso era lo que ten\u00eda.<\/p>\n<p><strong>\u00bfCu\u00e1les fueron sus primeros s\u00edntomas?<\/strong>:<\/p>\n<p>No pod\u00eda ponerme de puntillas, al principio s\u00f3lo de un lado.<\/p>\n<p><strong>\u00bfTiene otros familiares que padezcan LGMD?<\/strong><\/p>\n<p>No<\/p>\n<p><strong>\u00bfCu\u00e1les crees que son los mayores retos de vivir con LGMD?<\/strong>:<\/p>\n<p>Que hay mucha m\u00e1s planificaci\u00f3n a la hora de programar cualquier actividad.  Muchas actividades cotidianas (viajar, ir de compras, ir a un restaurante) implican muchas m\u00e1s cosas a las que hay que prestar atenci\u00f3n.<\/p>\n<p><strong>\u00bfCu\u00e1l es su mayor logro?<\/strong>:<\/p>\n<p>En 2000 cre\u00e9 un sitio web sobre la disferlina (el gen de mi subtipo de LGMD).  No sab\u00eda nada de dise\u00f1o web, pero quer\u00eda que otros pacientes tuvieran una fuente de informaci\u00f3n sobre la enfermedad y las investigaciones en curso.  La familia Jain se puso en contacto conmigo cuando diagnosticaron a uno de sus hijos y crearon la Fundaci\u00f3n Jain, que apoya la investigaci\u00f3n de mi subtipo.  En 2007, la Fundaci\u00f3n Jain organiz\u00f3 la primera conferencia de investigaci\u00f3n sobre la disferlina.  No paraba de pellizcarme pensando que no pod\u00eda ser verdad: \u00a1hab\u00eda una conferencia dedicada a esta enfermedad!<\/p>\n<p><strong>\u00bfC\u00f3mo le ha influido la LGMD para convertirse en la persona que es hoy?<\/strong><\/p>\n<p>Creo que me ha hecho m\u00e1s considerada y consciente de los dem\u00e1s.  Siempre fui muy independiente cuando era joven, pero necesitar ayuda con algunas cosas, y tambi\u00e9n querer trabajar con otros para encontrar curas para las LGMD, me ha ense\u00f1ado la importancia de pedir ayuda cuando la necesitas, ofrecer ayuda cuando puedes y trabajar juntos.<\/p>\n<p><strong>\u00bfQu\u00e9 quiere que el mundo sepa sobre la LGMD?<\/strong>:<\/p>\n<p>En primer lugar, que existe.  Creo que mucha gente tiene la idea de que la DM s\u00f3lo afecta a los chicos j\u00f3venes, o al menos a los ni\u00f1os.  Yo la ten\u00eda antes de empezar a tener s\u00edntomas.  Quiero que sepan que hay muchos tipos diferentes de DM y que los s\u00edntomas pueden empezar a cualquier edad.<\/p>\n<p>En segundo lugar, creo que la sociedad tiende a ver la discapacidad como algo en blanco y negro.  Es decir, o se es discapacitado y se necesita ayuda, o se est\u00e1 completamente bien y no se necesita.   Pero en el caso de una enfermedad como la LGMD, cuyos s\u00edntomas suelen progresar lentamente, \u00bfcu\u00e1ndo se convierte uno exactamente en discapacitado?  Creo que la forma en que est\u00e1n establecidas las cosas a menudo disuade a las personas que pueden y quieren trabajar de hacerlo, y de hacer todo lo que puedan con sus vidas.<\/p>\n<p>Quiero que otros pacientes sepan que no est\u00e1n solos.  Cuando estaba en la universidad, estaba muy preocupada por mi LGMD (que en realidad no estaba diagnosticada), pero no sent\u00eda que pudiera compartirlo con nadie.  Muchos a\u00f1os despu\u00e9s, conoc\u00ed a otro paciente que tambi\u00e9n padec\u00eda LGMD, \u00a1que estaba en la misma universidad en la misma \u00e9poca que yo!  Aunque la LGMD es una enfermedad rara, hay otras personas ah\u00ed fuera y es bueno conectar con ellas.<\/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>O patinar sobre hielo o esquiar.  Antes de empezar a tener s\u00edntomas era patinadora art\u00edstica de competici\u00f3n, y estar\u00eda muy bien poder volver a hacerlo.  Tambi\u00e9n esquiaba mucho cuando era m\u00e1s joven y me encantaba.<\/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>09\/30\/2015: Name:\u00a0 Brad\u00a0 Age: 51 yrs. old Country: United States [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1027,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[23,55,16],"class_list":["post-1026","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2b","tag-miyoshi-myopathy","tag-united-states"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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