{"id":2781,"date":"2019-09-12T11:55:24","date_gmt":"2019-09-12T16:55:24","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2781"},"modified":"2019-09-12T11:55:24","modified_gmt":"2019-09-12T16:55:24","slug":"individual-with-lgmd-tasha-2","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/uncategorized\/2019\/09\/12\/individual-with-lgmd-tasha-2\/","title":{"rendered":"Persona con LGMD: Tasha"},"content":{"rendered":"

LGMD \"ENTREVISTA EN PRIMER PLANO\"<\/strong><\/p>\n\n\n\n

\"\"<\/figure>\n\n\n\n

Nombre<\/strong>: Tasha              Edad<\/strong>: 46<\/p>\n\n\n\n

Pa\u00eds<\/strong>: Estados Unidos<\/p>\n\n\n\n

Subtipo LGMD<\/strong>: LGMD2L\n<\/p>\n\n\n\n

\u00bfA qu\u00e9 edad le diagnosticaron<\/strong>:<\/p>\n\n\n\n

Me diagnosticaron a los 13 a\u00f1os, pero ten\u00eda problemas desde los 8 aproximadamente.\ndesde los 8. Dijeron que eran dolores de\ndolores de crecimiento y luego me dieron varios diagn\u00f3sticos err\u00f3neos. A los 13 a\u00f1os, me examinaron los niveles sangu\u00edneos\ny estaban fuera de lo normal.<\/p>\n\n\n\n

\u00bfCu\u00e1les fueron sus primeros s\u00edntomas?<\/strong>:<\/p>\n\n\n\n

Experiment\u00e9 debilidad y dolores horribles en ambas pantorrillas\ndespu\u00e9s de hacer ejercicio.<\/p>\n\n\n\n

\u00bfTiene otros familiares que padezcan LGMD?<\/strong><\/p>\n\n\n\n

S\u00ed, mi hermano peque\u00f1o tiene el mismo diagn\u00f3stico de LGMD2L. \u00c9l ha tenido una progresi\u00f3n totalmente diferente\ny nivel de atrofia muscular. Mi hermana\nhermana mayor no la tiene. Mis dos\npadres eran portadores.<\/p>\n\n\n\n

\u00bfCu\u00e1les cree que son los mayores retos\nde vivir con LGMD<\/strong>:<\/p>\n\n\n\n

Mis mayores retos con esta enfermedad son el cansancio y el\nel dolor. Y la incomprensi\u00f3n de la gente.<\/p>\n\n\n\n

\u00bfCu\u00e1l es su mayor logro?<\/strong>:<\/p>\n\n\n\n

Continuando cada d\u00eda, trabajando y haciendo ejercicio.<\/p>\n\n\n\n

\u00bfC\u00f3mo ha influido la LGMD en la persona\npersona que eres hoy:<\/strong><\/p>\n\n\n\n

Depende. Me ha llevado a ser una defensora de m\u00ed misma y de mi salud. Me dijeron que en la edad adulta estar\u00eda en una silla de ruedas, si no antes. Tambi\u00e9n me dijeron que planificara mi carrera en consecuencia. Luego me dijeron que dejara todos los deportes y actividades que practicaba. A los 13 a\u00f1os, esto afect\u00f3 profundamente a mi infancia, ya que practicaba muchos deportes y se me daban muy bien, sobre todo el f\u00fatbol. Para no volverme loca, ignor\u00e9 el consejo del m\u00e9dico y lo hice de todos modos. Jugu\u00e9 al f\u00fatbol en la universidad y despu\u00e9s. Creo que me ayud\u00f3 en general con mi actitud y mi bienestar f\u00edsico. A menudo me dol\u00eda y ten\u00eda dificultades para caminar despu\u00e9s, pero creo que en general me ayud\u00f3 a mantenerme sano y los m\u00fasculos activos. Sigo haciendo ejercicio y actividades al aire libre, pero el tiempo de recuperaci\u00f3n es m\u00e1s largo. Soy contable y creo que eso se debe en parte a mis capacidades. Creo que la LGMD me ha hecho una persona m\u00e1s fuerte en general. <\/p>\n\n\n\n

\u00bfQu\u00e9 quiere que el mundo sepa sobre la LGMD?<\/strong>:<\/p>\n\n\n\n

En primer lugar que aunque la concienciaci\u00f3n se ha puesto en primer plano, sobre todo acerca de la DM de Duchenne, fue principalmente debido a los Teletones de Jerry Lewis cada a\u00f1o. Hay muchas otras formas de distrofia muscular que personas como yo tenemos.... que tambi\u00e9n necesitan investigaci\u00f3n. La gente est\u00e1 sufriendo y \u00a1NO HAY CURA! Adem\u00e1s, con la LGMD, me he dado cuenta de que no siempre es evidente que la gente tiene una discapacidad. Es decir,....Parezco totalmente normal, pero tengo varios problemas que la gente no reconoce. Como no voy en silla de ruedas, algunos piensan que estoy fingiendo. Ya no puedo subir escaleras y he tenido que rechazar muchas oportunidades de trabajo porque no hab\u00eda ascensor.<\/p>\n\n\n\n

Si su LGMD pudiera \"curarse\" ma\u00f1ana mismo, \u00bfqu\u00e9\nser\u00eda lo primero que querr\u00edas hacer<\/strong>:<\/p>\n\n\n\n

Le dir\u00eda al mundo.....<\/p>\n\n\n\n

* Para leer m\u00e1s \"Entrevistas en el punto de mira de la LGMD\" o\npara ofrecerse voluntario para aparecer en una pr\u00f3xima entrevista, visite nuestro sitio web\nen https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a>  <\/p>\n\n\n\n

* * * Por favor, ME GUSTA, COMENTARIO y COMPARTIR este post para ayudar a crear conciencia\n\u00a1sobre la LGMD!
\n
\n<\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name:  Tasha              Age: 46 Country: United States […]<\/p>","protected":false},"author":1,"featured_media":2782,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,49,1],"tags":[93],"class_list":["post-2781","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2l","category-uncategorized","tag-lgmd2l-united-states"],"acf":[],"yoast_head":"\nIndividual with LGMD: Tasha - 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=\"http:\/\/www.lgmd-info.org\/es\/uncategorized\/2019\/09\/12\/individual-with-lgmd-tasha-2\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Individual with LGMD: Tasha - 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