{"id":2098,"date":"2018-07-13T09:14:39","date_gmt":"2018-07-13T14:14:39","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2098"},"modified":"2018-07-13T09:14:39","modified_gmt":"2018-07-13T14:14:39","slug":"individual-with-lgmd-majed","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2018\/07\/13\/individual-with-lgmd-majed\/","title":{"rendered":"INDIVIDUO CON LGMD: Majed"},"content":{"rendered":"<p><strong>LGMD \"ENTREVISTA EN PRIMER PLANO\"<\/strong><\/p>\n<p><strong>Nombre<\/strong>: Majed\u00a0 \u00a0<strong>Edad<\/strong>:\u00a0 20\u00a0\u00a0<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2018\/07\/LGMD2C-Majed-1.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-2099 alignright\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27300%27%20height%3D%27169%27%20viewBox%3D%270%200%20300%20169%27%3E%3Crect%20width%3D%27300%27%20height%3D%27169%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2018\/07\/LGMD2C-Majed-1-300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>Pa\u00eds<\/strong>:  Siria \/ Alemania<\/p>\n<p><strong>Subtipo LGMD<\/strong>:  LGMD2C<\/p>\n<p>&nbsp;<\/p>\n<p><strong>A QU\u00c9 EDAD LE DIAGNOSTICARON<\/strong>:<\/p>\n<p>Me lo diagnosticaron a los 8 a\u00f1os.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>\u00bfCU\u00c1LES FUERON SUS PRIMEROS S\u00cdNTOMAS?<\/strong>:<\/p>\n<p>Los s\u00edntomas empezaron a aparecer cuando ten\u00eda 7 a\u00f1os.  De peque\u00f1o, caminaba de puntillas.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>\u00a0\u00bfTIENE OTROS FAMILIARES CON ALGMD?<\/strong>:<\/p>\n<p>S\u00ed, a mi hermano y a dos de mis t\u00edos (hermanos de mi madre) tambi\u00e9n les han diagnosticado LGMD2C. (Mi hermano a\u00fan vive en Siria y se llama Younis. Apareci\u00f3 anteriormente en una entrevista de LGMD Spotlight).<\/p>\n<p>&nbsp;<\/p>\n<p><strong>\u00bfCU\u00c1LES CREE QUE SON LOS MAYORES RETOS DE VIVIR CON LGMD?<\/strong>:<\/p>\n<p>El mayor reto para m\u00ed es caminar y estar de pie durante mucho tiempo. Puedo caminar 500 metros con un bast\u00f3n.   Tambi\u00e9n uso silla de ruedas y en el ba\u00f1o tengo algunas dificultades.  A veces hago algunas tareas cotidianas por mi cuenta.<\/p>\n<p>Ahora vivo en Alemania con mi t\u00edo y hace dos a\u00f1os que no veo a mis padres ni a mis hermanos.  Creo que es duro vivir solo... lejos de mi familia, mis hermanos y mi pa\u00eds.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>\u00bfCU\u00c1L ES SU MAYOR LOGRO?<\/strong>:<\/p>\n<p>La verdad es que no s\u00e9 cu\u00e1l es el mayor logro para m\u00ed.   Pero estoy orgullosa de poder seguir caminando y haciendo algo de ejercicio.<\/p>\n<p>A pesar de las condiciones de guerra y desplazamiento en Siria, consegu\u00ed aprobar el bachillerato y hace 10 a\u00f1os aprend\u00ed a nadar.<\/p>\n<p>Pero el mayor reto que he realizado es el viaje de refugio desde Siria hasta Alemania a trav\u00e9s de 9 pa\u00edses.  En 10 d\u00edas no puedo describir las dificultades que me encontr\u00e9 en la carretera. En un bosque en Serbia, recorr\u00ed 5 kil\u00f3metros y no ten\u00eda una silla de ruedas en ese momento, excepto por el hundimiento de nuestro barco frente a las islas griegas no s\u00e9 c\u00f3mo sobreviv\u00ed al ahogamiento.<\/p>\n<p>Ahora aprendo alem\u00e1n y, cuando termine, completar\u00e9 mis estudios universitarios.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>\u00bfC\u00d3MO TE HA INFLUIDO LA ALGMD PARA CONVERTIRTE EN LA PERSONA QUE ERES HOY?<\/strong>:<\/p>\n<p>La LGMD me ha ense\u00f1ado a ser un ser humano paciente y amable.  Una persona puede hacer lo que quiera sean cuales sean sus circunstancias.  Es duro, pero tambi\u00e9n me ha ense\u00f1ado a mostrar voluntad y determinaci\u00f3n.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>\u00bfQU\u00c9 QUIERE QUE EL MUNDO SEPA SOBRE LA DGML?<\/strong>:<\/p>\n<p>Quiero que el mundo conozca mejor esta enfermedad y los distintos tipos de LGMD. Adem\u00e1s, quiero que la gente sepa que es vital que haya m\u00e1s investigaci\u00f3n centrada en la LGMD para ayudar a encontrar una cura y un tratamiento para estas enfermedades. Espero que los cient\u00edficos encuentren una cura para esta enfermedad. Tambi\u00e9n quiero que la gente tome medidas para prevenirla.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>SI MA\u00d1ANA SE PUDIERA \"CURAR\" SU DGML, \u00bfQU\u00c9 SER\u00cdA LO PRIMERO QUE DESEAR\u00cdA HACER?<\/strong>:<\/p>\n<p>Lo primero que har\u00e9 ser\u00e1 ir a la piscina y saltar desde lo alto.  Adem\u00e1s de correr r\u00e1pido y jugar al f\u00fatbol con mi hermano Younis.<\/p>\n<p>&nbsp;<\/p>\n<p>* Para leer m\u00e1s \"LGMD Spotlight Interviews\" o presentarse voluntario para una pr\u00f3xima entrevista, visite nuestro sitio web en <a href=\"https:\/\/www.lgmd-info.org\/es\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><u>\u00a0 <\/u><\/p>\n<p>* Por favor, dale al LIKE, COMENTA y COMPARTE este post para ayudar a concienciar sobre la LGMD.<\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name: Majed\u00a0 \u00a0Age:\u00a0 20\u00a0\u00a0 Country: \u00a0Syria \/ [&hellip;]<\/p>","protected":false},"author":1,"featured_media":2099,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,75],"tags":[98],"class_list":["post-2098","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2c","tag-lgmd2c-syria-germany"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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