{"id":1638,"date":"2017-12-04T15:59:19","date_gmt":"2017-12-04T21:59:19","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1638"},"modified":"2017-12-04T15:59:19","modified_gmt":"2017-12-04T21:59:19","slug":"deceena","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2017\/12\/04\/deceena\/","title":{"rendered":"INDIVIDUO CON LGMD: Deceena"},"content":{"rendered":"

LGMD \"Entrevista en primer plano\"<\/strong><\/span><\/p>\n

Nombre<\/strong><\/span>:\u00a0 <\/span>Deceena\u00a0 \u00a0Edad<\/strong>: 31 a\u00f1os\"\"<\/a><\/span><\/p>\n

Pa\u00eds<\/strong>: EE.UU.<\/span><\/p>\n

Subtipo LGMD<\/strong>: LGMD2A - tambi\u00e9n conocida como Calpainopat\u00eda<\/span><\/p>\n

 <\/p>\n

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

Me lo diagnosticaron a los 29 a\u00f1os.<\/span><\/p>\n

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

El primer s\u00edntoma fue debilidad muscular en las piernas. Era incapaz de <\/span>escaleras arriba como una persona normal, a partir de 2008, tras el nacimiento de mi segundo hijo. Los m\u00e9dicos lo achacaron al hecho de haber tenido un beb\u00e9 y me aconsejaron que hiciera ejercicio. Solo ten\u00eda 22 a\u00f1os y sab\u00eda que pasaba algo m\u00e1s. Ojal\u00e1 mis m\u00e9dicos me hubieran tomado m\u00e1s en serio. Fui a numerosos m\u00e9dicos y especialistas, y todos me dijeron que estaba \"bien\". Acab\u00e9 encontrando un m\u00e9dico de base hol\u00edstica que pronunci\u00f3 las palabras \"Dios m\u00edo, \u00bfpor qu\u00e9 nadie te ha ayudado?\". Me envi\u00f3 a fisioterapia, y en mi \u00faltimo <\/span>d\u00eda Mi fisioterapeuta me pregunt\u00f3 si alguien de mi familia ten\u00eda distrofia muscular. (No). Me mencion\u00f3 que hay formas que son recesivas, y sugiri\u00f3 a mi m\u00e9dico que empezara a buscar las pruebas y derivaciones adecuadas para la DM. Fue la primera persona que me mencion\u00f3 las palabras \"distrofia muscular\". Entonces encontr\u00e9 un grupo incre\u00edble en Facebook que me permit\u00eda publicar v\u00eddeos m\u00edos. Poco despu\u00e9s, la Fundaci\u00f3n Jain me condujo a la investigaci\u00f3n gen\u00e9tica.<\/span>, y pude ver al Dr. Jerry Mendel que termin\u00f3 con un diagn\u00f3stico definitivo de LGMD2A. El proceso de mi nuevo proveedor<\/span>, a las pruebas gen\u00e9ticas, al diagn\u00f3stico fue de unos 3 MESES despu\u00e9s de muchos A\u00d1OS de que me dijeran que estaba \"bien\" y que hiciera ejercicio. Recib\u00ed mi diagn\u00f3stico <\/span>en mis hijas menores 1st<\/sup> cumplea\u00f1os. Un d\u00eda que siempre recordar\u00e9....<\/span><\/p>\n

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

Nadie m\u00e1s de mi familia tiene LGMD.<\/span><\/p>\n

\u00bfCu\u00e1les crees que son los mayores retos de vivir con LGMD?<\/strong>:<\/span><\/p>\n

Actualmente, mi mayor reto es explicar a mis hijos que no puedo hacer ciertas actividades, o correr y jugar con ellos, o incluso hacerles la lista; y explicarles por qu\u00e9. A veces es muy dif\u00edcil responder a sus preguntas. El segundo gran reto es que la gente me haga comentarios groseros sobre que deber\u00eda dejar el aparcamiento para minusv\u00e1lidos para los minusv\u00e1lidos. Aunque parezca una persona \"normal\", tengo dificultades para caminar largas distancias y ya no puedo subir escaleras o bordillos sin la ayuda de mi marido.<\/span><\/p>\n

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

Dir\u00eda que mi mayor logro ha sido aprender a amar y compadecer a todo el mundo. Nunca me hab\u00eda dado cuenta de los retos emocionales a los que se enfrentan las personas con discapacidad. La mayor\u00eda pensar\u00eda que es s\u00f3lo f\u00edsico, pero no es as\u00ed. He encontrado una pareja que decidi\u00f3 estar a mi lado y seguir cas\u00e1ndose conmigo 9 d\u00edas despu\u00e9s. Tuvimos una conversaci\u00f3n muy franca y dif\u00edcil (para m\u00ed) sobre si deb\u00edamos seguir adelante sabiendo las dificultades f\u00edsicas, emocionales y mentales a las que nos enfrentar\u00eda esta horrible enfermedad. Podr\u00eda haberse marchado, sabiendo que yo ten\u00eda una enfermedad neurol\u00f3gica progresiva, pero me ama incondicionalmente y me ha ense\u00f1ado el verdadero significado del amor incondicional y la aceptaci\u00f3n. Me ha ense\u00f1ado a amar m\u00e1s profundamente y siempre, en cualquier situaci\u00f3n, incluso en situaciones que nos parecen terribles. Hemos formado una hermosa familia, que es mi mayor logro. Espero que podamos seguir predicando con el ejemplo, con amor y compasi\u00f3n, para que nuestros hijos lo vean y ojal\u00e1 lo vivan. Este mundo ser\u00eda un lugar mejor. <\/span>es la gente tratara a las personas como personas, y no como su discapacidad.<\/span><\/p>\n

\u00bfC\u00f3mo le ha influido la LGMD para convertirse en la persona que es hoy? <\/strong><\/span><\/p>\n

Tener LGMD me ha ense\u00f1ado a defenderme y a hablar claro. He tenido que abogar por m\u00ed misma durante muchos a\u00f1os, diciendo a los m\u00e9dicos que estaban EQUIVOCADOS. \u00bfQui\u00e9n hace eso? Esta chica de aqu\u00ed. Esto me ha inspirado para convertirme en la voz <\/span>para otros. Abogo de todo coraz\u00f3n por quienes no pueden<\/span>, o a quienes puedan necesitar ayuda. Considero que tener una discapacidad es un don. Se me brindan oportunidades que ayudan a definir y dar forma a las creencias que tengo hoy. Siempre dir\u00e9 lo que pienso, aunque me resulte inc\u00f3modo y nadie m\u00e1s quiera hacerlo. Siempre cuestionar\u00e9 a mis m\u00e9dicos, y no dejar\u00e9 de hacerlo. Tener LGMD me ha convertido en esta persona feroz con el empuje y la determinaci\u00f3n que tengo hoy.<\/span><\/p>\n

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

No s\u00e9 ni por d\u00f3nde empezar con esta pregunta. Principalmente, los que padecen LGMD NO son diferentes de los que no la padecen. Sigo respirando y sigo teniendo sentimientos. Sigo amando igual y sigo sufriendo igual. Quiero ser feliz y tener las mismas oportunidades que los que no tienen DM. No soy diferente, excepto quiz\u00e1 un poco m\u00e1s consciente de c\u00f3mo trata la gente a los dem\u00e1s.<\/span><\/p>\n

Si su LGMD pudiera \"curarse\" ma\u00f1ana, \u00bfqu\u00e9 ser\u00eda lo primero que desear\u00eda hacer?<\/strong>:<\/span><\/p>\n

Lo primero que har\u00eda ser\u00eda correr hacia mis hijos, luchar con ellos en el suelo, saltar con ellos y lanzarlos por los aires. Echo esto de menos m\u00e1s de lo que puedo expresar con palabras. Pude hacerlo con mis hijos mayores, que tienen casi 12 y 9 a\u00f1os.<\/span>, pero no he podido hacerlo con los dos m\u00e1s peque\u00f1os, que tienen 6 y casi 3 a\u00f1os. Despu\u00e9s de eso, saltaba a los brazos de mi marido y me quedaba all\u00ed un momento. Entonces necesitaba salir a correr, una carrera larga. Correr era mi actividad preferida, algo que no he podido hacer desde hace muchos a\u00f1os.<\/span><\/p>\n

 <\/p>\n

* Para leer m\u00e1s \"LGMD Spotlight Interviews\" o presentarse voluntario para una pr\u00f3xima entrevista, visite nuestro sitio web en<\/span>: https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a>\u00a0<\/span><\/p>\n

* Por favor, dale al LIKE, COMENTA y COMPARTE este post para ayudar a concienciar sobre la LGMD.<\/span><\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSpotlight Interview\u201d Name:\u00a0 Deceena\u00a0 \u00a0Age: 31 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":1637,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-1638","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: Deceena - 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\/2017\/12\/04\/deceena\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Deceena - 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