{"id":999,"date":"2015-08-27T15:25:15","date_gmt":"2015-08-27T20:25:15","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=999"},"modified":"2015-08-27T15:25:15","modified_gmt":"2015-08-27T20:25:15","slug":"sabrina","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2015\/08\/27\/sabrina\/","title":{"rendered":"INDIVIDUO CON LGMD: Sabrina"},"content":{"rendered":"

08\/27\/2015<\/p>\n

Nombre<\/strong>: Sa<\/strong>brina \u00a0\u00a0\u00a0\u00a0\u00a0EDAD:<\/strong> 32\"LGMD2D<\/a><\/p>\n

PA\u00cdS:\u00a0 <\/strong>Bangladesh<\/p>\n

Subtipo LGMD:<\/strong> \u00a0LGMD 2D<\/p>\n

\u00a0<\/strong><\/p>\n

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

A los 9 a\u00f1os me diagnosticaron la enfermedad.<\/p>\n

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

Me ca\u00eda con frecuencia y ten\u00eda dificultades para subir escaleras y correr.<\/p>\n

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

\u00a1S\u00ed! Mi hermana peque\u00f1a tambi\u00e9n tiene LGMD.<\/p>\n

 <\/p>\n

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

Al vivir con LGMD, los primeros retos para m\u00ed fueron las barreras sociales y de infraestructura. Por ejemplo, debido a<\/p>\n

La inaccesibilidad de nuestro pa\u00eds me impidi\u00f3 terminar mis estudios. No pod\u00eda ir a bodas, reuniones familiares, cumplea\u00f1os ni nada por el estilo. As\u00ed que reduje la socializaci\u00f3n con los dem\u00e1s desde la infancia. Crec\u00ed sobre todo entre las cuatro paredes de mi casa.<\/p>\n

Adem\u00e1s, los retos f\u00edsicos para m\u00ed son que no puedo hacer nada por m\u00ed misma. No puedo mover ninguna parte del cuerpo, excepto los dedos de las manos y de los pies y la cabeza. Necesito ayuda para pr\u00e1cticamente todo, as\u00ed que tengo que depender totalmente de otra persona. Han pasado los d\u00edas y ahora mi estado f\u00edsico es m\u00e1s cr\u00edtico. El mayor reto f\u00edsico para m\u00ed en estos momentos es mi problema respiratorio, a pesar de lo cual quiero seguir adelante en mi vida con toda pasi\u00f3n.<\/p>\n

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

Mi vida cambi\u00f3 de la noche a la ma\u00f1ana cuando un d\u00eda me enter\u00e9 de que mi querida hermana peque\u00f1a padec\u00eda la misma enfermedad. Pude visualizar para ella el mismo futuro agonizante que yo estaba experimentando- esto me hizo rebelarme. El resto del mundo no muestra la misma imagen, \u00bfpor qu\u00e9 esta situaci\u00f3n de discriminaci\u00f3n en nuestro pa\u00eds? \u00bfPor qu\u00e9 tienen que o\u00edr \"no\" a todo en la vida? Incluso despu\u00e9s de formar parte de esta sociedad se distancian. Con todas estas preguntas d\u00e1ndome vueltas en la cabeza, me sent\u00ed frustrado. Entonces cambi\u00e9 un poco de mentalidad y escrib\u00ed una carta al Primer Ministro de mi pa\u00eds en febrero de 2008.<\/p>\n

En abril de 2009 tuve la oportunidad de ponerme en contacto con el mundo a trav\u00e9s de Internet y Facebook, que es una forma f\u00e1cil de reunir a la gente. Inspirado por un amigo de Facebook, intent\u00e9 hacer llegar la carta al mayor n\u00famero posible de personas y concienciarlas sobre los derechos de las personas con discapacidad a trav\u00e9s de la incidencia pol\u00edtica. As\u00ed comenz\u00f3 la andadura de Bangladesh Society for the Change and Advocacy Nexus (B-SCAN), una organizaci\u00f3n voluntaria, el 17 de julio de 2009, con el fin de ofrecer a las personas con discapacidad una vida mejor mediante la creaci\u00f3n de una red de defensa del cambio del sistema en Bangladesh. Tambi\u00e9n empec\u00e9 a escribir en blogs de sensibilizaci\u00f3n. En 2011 particip\u00e9 en el concurso internacional de blogs de la cadena de noticias alemana Deutsche Welle y obtuve el segundo mejor puesto del mundo.<\/p>\n

B-SCAN en su conjunto obtuvo una respuesta tremenda, muchos mostraron su preocupaci\u00f3n. Nuestra vida dentro del muro cambi\u00f3. Empezamos a so\u00f1ar con campa\u00f1as de sensibilizaci\u00f3n y defensa de los derechos de las personas con discapacidad en todo el pa\u00eds, que alg\u00fan d\u00eda sensibilizar\u00e1n y preocupar\u00e1n a la gente y ayudar\u00e1n a las personas con discapacidad a conseguir sus derechos.<\/p>\n

Cada ma\u00f1ana, cuando me levanto, lo primero que me llama la atenci\u00f3n es el cielo azul. Siento que esta tierra es realmente hermosa, que la vida es bella. Me gustar\u00eda tocar el cielo. Me gustar\u00eda ponerme de pie bajo el cielo y respirar hondo. Nunca pens\u00e9 que podr\u00eda hacerlo, s\u00f3lo so\u00f1aba y deseaba. Este deseo, esta fuerza de voluntad, sol\u00eda darme fuerzas, inspirarme para vivir una buena vida. Y esta fuerza de voluntad s\u00f3lo me ha hecho so\u00f1ar con B-SCAN, que creo que es el mayor \u00e9xito de mi vida. B-SCAN es la motivaci\u00f3n que me ha hecho salir a cielo abierto.<\/p>\n

\u00bfC\u00f3mo te ha influido la LGMD para convertirte en la persona que eres hoy? <\/strong>: <\/strong><\/p>\n

Cuando me diagnosticaron LGMD nunca me lo tom\u00e9 como un problema ni nada por el estilo. Mi vida cambi\u00f3 cuando le ocurri\u00f3 lo mismo a mi hermana. Cuando la vi pasar por lo mismo fue como una imagen totalmente nueva, una perspectiva totalmente nueva para m\u00ed. Me hizo pensar en todas las \"Sabrinas\" de este pa\u00eds, en su supervivencia, su dolor y su miseria. Todos estos pensamientos hicieron nacer una nueva Sabrina en m\u00ed. Me hice m\u00e1s fuerte como persona.<\/p>\n

Deseo cambiar las perspectivas de la gente y convertirlo en un lugar adecuado para que las personas con discapacidad establezcan sus derechos.<\/p>\n

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

Vivir con LGMD no es el final de la vida. Todo el mundo deber\u00eda aprender m\u00e1s y m\u00e1s sobre ella. Se puede hacer estudiando todas las p\u00e1ginas web relacionadas. Todo el mundo deber\u00eda seguir viviendo libre y felizmente como siempre o incluso m\u00e1s. Trate de disfrutar de cada momento de vida. No importa si todav\u00eda no hay tratamiento. La frustraci\u00f3n s\u00f3lo convierte tu vida en una carga para ti mismo. La vida es realmente bella. Si hay un problema, debe haber una soluci\u00f3n. S\u00f3lo hay que buscarla. Mantente siempre positivo.<\/p>\n

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

Mi felicidad no tendr\u00e1 l\u00edmites porque por primera vez en la vida podr\u00e9 salir corriendo a la primera gota de lluvia. Adem\u00e1s, si me curo, dar\u00e9 a conocer el tratamiento a todo el mundo para que se curen como yo.<\/p>","protected":false},"excerpt":{"rendered":"

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