{"id":3178,"date":"2020-01-12T12:52:48","date_gmt":"2020-01-12T18:52:48","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3178"},"modified":"2020-01-12T12:52:48","modified_gmt":"2020-01-12T18:52:48","slug":"natasha","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2020\/01\/12\/natasha\/","title":{"rendered":"INDIVIDUO CON LGMD: Natasha"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

LGMD \"ENTREVISTA EN PRIMER PLANO\"<\/h3>\n\n\n\n

Nombre<\/strong>: Natasha \nEdad<\/strong>:\n25 a\u00f1os<\/p>\n\n\n\n

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

Subtipo LGMD<\/strong>: LGMD D1 DNAJB6-related (Anteriormente LGMD tipo\n1D)<\/p>\n\n\n\n

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

Me lo diagnosticaron a los 23 a\u00f1os.<\/p>\n\n\n\n

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

Nuestro subtipo es de aparici\u00f3n tard\u00eda, por lo que actualmente no tengo s\u00edntomas, aunque mientras crec\u00eda hab\u00eda peque\u00f1as cosas que tienen m\u00e1s sentido ahora que conozco mi diagn\u00f3stico. De peque\u00f1a, no pod\u00eda correr tan r\u00e1pido como mis compa\u00f1eros y ten\u00eda problemas en danza para levantarme del suelo sin usar las manos, por ejemplo.<\/p>\n\n\n\n

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

S\u00ed, mi padre, mi t\u00edo (por parte de mi padre) y mi abuelo paterno tienen el mismo diagn\u00f3stico.\npaterno tienen el mismo diagn\u00f3stico.<\/p>\n\n\n\n

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

El mayor reto para m\u00ed ha sido saber que un d\u00eda\nmi movilidad ser\u00e1 menor de lo que es ahora y que tal vez no pueda continuar\nllevando el estilo de vida activo que me gusta llevar actualmente.<\/p>\n\n\n\n

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

No estoy seguro de cu\u00e1l es mi mayor logro... Tendr\u00eda que decir que los lazos familiares y de amistad que he mantenido. Adem\u00e1s de la comunidad que tenemos y que estamos construyendo para las formas dominantes de LGMD a trav\u00e9s de la Fundaci\u00f3n LGMD-1D DNAJB6, que es una fundaci\u00f3n p\u00fablica sin \u00e1nimo de lucro cuya misi\u00f3n es mantener un lugar central para que las personas diagnosticadas de distrofia muscular de cinturas tipo 1D (LGMD1D) se re\u00fanan, consoliden noticias relevantes y pongan en marcha iniciativas de recaudaci\u00f3n de fondos para avanzar en la investigaci\u00f3n.  https:\/\/lgmd1d.org<\/a>  Tambi\u00e9n hemos creado un Registro de Pacientes para todos los pacientes diagnosticados con una forma autos\u00f3mica dominante de LGMD.  <\/p>\n\n\n\n

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

Siempre pienso en el futuro, en c\u00f3mo afectar\u00e1n mis acciones actuales a mi cuerpo, a mis seres queridos y a la familia que espero formar.\nc\u00f3mo afectar\u00e1n mis acciones a mi cuerpo, a mis seres queridos y a la familia que espero formar. Me ha hecho despertar mi paciencia y tratar de\nllevar un estilo de vida menos intenso f\u00edsicamente.<\/p>\n\n\n\n

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

Tenemos que seguir\ncorriendo la voz y conectando de forma que se ayude a encontrar una cura. Por ejemplo, un registro de pacientes de LGMD\n(LGMD tipo 1) ser\u00e1 vital para la investigaci\u00f3n y la b\u00fasqueda de una cura.<\/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

\u00a1\u00a1Si me curara ma\u00f1ana, ir\u00eda a bailar para celebrarlo!! <\/p>\n\n\n\n

\n\n\n\n

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<\/a><\/p>","protected":false},"excerpt":{"rendered":"

LGMD “SPOTLIGHT INTERVIEW” Name:  Natasha  Age: 25 years old Country: […]<\/p>","protected":false},"author":1,"featured_media":3179,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,102,104],"tags":[],"class_list":["post-3178","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd-d1-dnajb6-related","category-lgmd1d"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Natasha - 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\/individuals-with-lgmd-interviews\/2020\/01\/12\/natasha\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Natasha - 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