{"id":2727,"date":"2019-06-12T14:29:32","date_gmt":"2019-06-12T19:29:32","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2727"},"modified":"2019-06-12T14:29:32","modified_gmt":"2019-06-12T19:29:32","slug":"individual-with-lgmd-jillena","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2019\/06\/12\/individual-with-lgmd-jillena\/","title":{"rendered":"INDIVIDUO CON LGMD: Jillena"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

LGMD\n\"Primer plano\"<\/strong><\/p>\n\n\n\n

Nombre<\/strong>: Jillena\n Edad<\/strong>: 32 a\u00f1os<\/p>\n\n\n\n

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

Subtipo LGMD<\/strong>: LGMD2A - una forma de Calpainopat\u00eda<\/p>\n\n\n\n

A QU\u00c9 EDAD LE DIAGNOSTICARON <\/strong>:<\/p>\n\n\n\n

Me diagnosticaron LGMD a los 21 a\u00f1os.\nedad de 21 a\u00f1os. Y luego, recib\u00ed la confirmaci\u00f3n\ngen\u00e9tica de mi subtipo LGMD2A hace un par de meses.<\/p>\n\n\n\n

\u00bfCU\u00c1LES FUERON SUS PRIMEROS S\u00cdNTOMAS? <\/strong>:<\/p>\n\n\n\n

Despu\u00e9s de tener a mi segundo hijo, empec\u00e9 a\na notar que las escaleras se me hac\u00edan dif\u00edciles. De hecho, las sub\u00eda a gatas. I\nTen\u00eda escoliosis, as\u00ed que atribu\u00ed mi dificultad para subir escaleras a la escoliosis.\nPero, entonces, tuve a mi segundo hijo y no pod\u00eda levantar la pierna hasta un bordillo\nf\u00e1cilmente. Adem\u00e1s, siempre fui delgada y\nnunca supe por qu\u00e9. Mi madre tem\u00eda que algo fuera mal y me convenci\u00f3 para que viera a un\nm\u00e9dico.<\/p>\n\n\n\n

\u00bfTIENE OTROS FAMILIARES QUE\nTIENEN LGMD :<\/strong><\/p>\n\n\n\n

Nadie m\u00e1s de mi familia ha sido diagnosticado de LGMD, pero mi madre ten\u00eda un hermano que viv\u00eda con una discapacidad f\u00edsica. Creemos que ten\u00eda distrofia muscular de Duchenne.<\/p>\n\n\n\n

\u00bfCU\u00c1LES SON PARA USTED LOS MAYORES\nDESAF\u00cdOS DE VIVIR CON LGMD <\/strong>:<\/p>\n\n\n\n

Lo primero es la lucha por la que tiene que pasar mi familia que\nno tendr\u00edan si yo no tuviera esta enfermedad. En segundo lugar, es el hecho de que no puedo ir, ir, ir como sol\u00eda\nantes. Mis brazos y piernas est\u00e1n m\u00e1s d\u00e9biles, lo que hace que me resulte agotador hacer muchas cosas.<\/p>\n\n\n\n

\u00bfCU\u00c1L ES SU MAYOR LOGRO? <\/strong>:<\/p>\n\n\n\n

Mi mayor logro es mi cambio de actitud m\u00e1s reciente. I\nme di cuenta de que ser negativo sobre mi enfermedad y mi destino no ayudaba a nadie. No s\u00f3lo he decidido vivir la vida mirando\na trav\u00e9s de un par de gafas diferentes, sino que tambi\u00e9n he decidido compartir esas\ngafas con el mundo a trav\u00e9s de mi viaje por la vida en una p\u00e1gina de Facebook que he creado.<\/p>\n\n\n\n

\u00bfC\u00d3MO TE HA INFLUIDO LA LGMD PARA\nEN LA PERSONA QUE ES HOY:<\/strong><\/p>\n\n\n\n

Una vez que acept\u00e9 que ten\u00eda esta enfermedad\ny que no ten\u00eda que ser miserable, hice una p\u00e1gina en Facebook. Empec\u00e9 a dar consejos sobre c\u00f3mo ser\npositivo. Desde entonces se ha convertido en mucho m\u00e1s. Ahora tengo muchos amigos en Facebook\nque se han convertido en un sistema de apoyo incre\u00edble. Adem\u00e1s, he compartido mi historia durante un discurso para la recaudaci\u00f3n de fondos Shamrock\npara recaudar fondos para la MDA. He florecido\nen una persona que quiere que todo el mundo vea lo que vale. Hace diez a\u00f1os, no me\nme preocupaba por m\u00ed misma, y mucho menos por los dem\u00e1s.<\/p>\n\n\n\n

\u00bfQU\u00c9 QUIERE QUE SEPA EL MUNDO?\nSOBRE LGMD <\/strong>:<\/p>\n\n\n\n

Quiero que el mundo sepa que la LGMD es una enfermedad extremadamente dif\u00edcil\nde sobrellevar porque te quita la independencia. A medida que\nA medida que envejeces, tus m\u00fasculos se debilitan y disminuye tu movilidad. Eso es duro,\nsobre todo cuando tienes tres hijos que corretear.<\/p>\n\n\n\n

SI SU LGMD PUDIERA \"CURARSE\"\nMA\u00d1ANA, \u00bfQU\u00c9 SER\u00cdA LO PRIMERO QUE QUERR\u00cdAS HACER <\/strong>:<\/p>\n\n\n\n

Me ir\u00eda de excursi\u00f3n\na las monta\u00f1as de Colorado con mi familia.<\/p>\n\n\n\n

* Para leer m\u00e1s \"LGMD Spotlight Interviews\" o presentarse voluntario para una pr\u00f3xima entrevista, visite nuestro sitio web en https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSpotlight interview\u201d Name:  Jillena  Age: 32 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":2728,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-2727","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a-calpainopathy-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Jillena - 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=\"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2019\/06\/12\/individual-with-lgmd-jillena\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Jillena - 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