{"id":1282,"date":"2016-07-26T15:59:21","date_gmt":"2016-07-26T20:59:21","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1282"},"modified":"2016-07-26T15:59:21","modified_gmt":"2016-07-26T20:59:21","slug":"maram","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2016\/07\/26\/maram\/","title":{"rendered":"INDIVIDUO CON LGMD: Maram"},"content":{"rendered":"

07\/26\/2016 –\u00a0<\/strong>LGMD \"Entrevista en primer plano\"<\/p>\n

NOMBRE<\/strong>: Maram\u00a0\u00a0\u00a0 EDAD<\/strong>: 26 a\u00f1os\"LGMD2E<\/a><\/p>\n

PA\u00cdS<\/strong>: Palestina<\/p>\n

Subtipo LGMD<\/strong>: LGMD2E<\/p>\n

 <\/p>\n

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

Me diagnosticaron distrofia muscular a los 10 a\u00f1os. Cuando ten\u00eda 26 a\u00f1os, recib\u00ed la confirmaci\u00f3n gen\u00e9tica de mi diagn\u00f3stico de LGMD2E.<\/p>\n

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

Cuando ten\u00eda 3 a\u00f1os, mis padres se dieron cuenta de que mi forma de andar era inestable y me costaba levantarme del suelo.<\/p>\n

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

No, soy el \u00fanico de mi familia.<\/p>\n

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

Hay tantos retos. Para mucha gente, las cosas sencillas son mis mayores retos, pero ir al ba\u00f1o y cambiar de posici\u00f3n de lado a lado mientras duermo me hacen sentir muy d\u00e9bil.<\/p>\n

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

En mi pa\u00eds la gente no sabe nada de la LGMD. Intento cada d\u00eda aumentar la concienciaci\u00f3n sobre la enfermedad a trav\u00e9s de las redes sociales. He ayudado a muchos pacientes de mi pa\u00eds y del mundo \u00e1rabe a hacerse la prueba gen\u00e9tica para confirmar su diagn\u00f3stico y conseguir el equipo que necesitamos para hacernos la vida un poco m\u00e1s f\u00e1cil. Tambi\u00e9n he contactado con pacientes de todo el mundo y nos hemos hecho muy amigos. Ellos son mis mayores logros.<\/p>\n

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

Creo que me ha hecho m\u00e1s fuerte de un modo u otro. Ahora me preocupo m\u00e1s por la gente que me rodea. Aprecio cada peque\u00f1a bendici\u00f3n de mi vida, incluida mi gran familia. Me he acercado m\u00e1s a Dios. Creo que me ha cambiado en el buen sentido y me gusta lo que soy ahora.<\/p>\n

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

Quiero que sepan que no somos tan diferentes de las personas normales. Lo que ocurre es que un simple error o mutaci\u00f3n gen\u00e9tica me ha causado dificultades para moverme mientras que ellos s\u00ed pueden. La causa no es tan complicada y si lo entendemos, podemos encontrar el tratamiento.<\/p>\n

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

Me gustar\u00eda abrazar a mis padres tan fuerte y no soltarlos nunca. No dejo de pensar en lo dura que ser\u00eda la vida sin ellos.<\/p>\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<\/p>","protected":false},"excerpt":{"rendered":"

07\/26\/2016 –\u00a0LGMD “Spotlight Interview” NAME:\u00a0 Maram\u00a0\u00a0\u00a0 AGE: 26 years old […]<\/p>","protected":false},"author":1,"featured_media":1281,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,62],"tags":[63],"class_list":["post-1282","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2e","tag-lgmd2e-palestine"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Maram - 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\/2016\/07\/26\/maram\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Maram - 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