{"id":5506,"date":"2021-09-02T15:13:45","date_gmt":"2021-09-02T15:13:45","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5506"},"modified":"2024-02-09T14:24:01","modified_gmt":"2024-02-09T14:24:01","slug":"cyanne","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2021\/09\/02\/cyanne\/","title":{"rendered":"INDIVIDUO CON LGMD: Cyanne"},"content":{"rendered":"

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

\"\"<\/p>\n

Nombre<\/strong>: Cyanne<\/p>\n

Edad<\/strong>:\u00a0 29<\/p>\n

Pa\u00eds<\/strong>: Australia Meridional<\/p>\n

Subtipo LGMD<\/strong>: LGMD Tipo 2i \/ R9 Relacionado con el distroglicano<\/p>\n

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

Me diagnosticaron distrofia muscular cuando s\u00f3lo ten\u00eda 2 a\u00f1os. No fue hasta los 21 cuando descubr\u00ed que ten\u00eda LGMD Tipo 2i. O R9 ahora que se ha cambiado el nombre.<\/p>\n

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

El primer s\u00edntoma que not\u00f3 mi madre fue que no pod\u00eda mantener la cabeza erguida cuando estaba en un andador.
\nAdem\u00e1s, no gateaba cuando otros de mi edad s\u00ed lo hac\u00edan. Simplemente me costaba mucho; f\u00edsicamente.<\/p>\n

El primer s\u00edntoma que not\u00e9 fue que no pod\u00eda seguir el ritmo de otros ni\u00f1os. No era tan r\u00e1pido como ellos, \u00a1pero nunca me molest\u00f3! Sab\u00eda que era diferente y no me importaba.<\/p>\n

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

Mi hermana gemela tambi\u00e9n tiene LGMD2i, pero no se conocen otros casos en la l\u00ednea familiar.<\/p>\n

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

Lucho por perder mi independencia. Cada vez est\u00e1 m\u00e1s lejos de mi alcance a medida que me deterioro. Como con la vida. \u00bfPodr\u00e9 alcanzar alguna vez el trabajo de mis sue\u00f1os? \u00bfVoy a conocer al hombre de mis sue\u00f1os? \u00bfCu\u00e1nto tiempo me queda para poder seguir haciendo las cosas que me gustan?<\/p>\n

Otro de mis retos al vivir con LGMD es que, con demasiada frecuencia, la gente s\u00f3lo ve mi silla de ruedas. No ven a la persona sentada en ella. Me estoy esforzando por cambiar esta situaci\u00f3n sensibilizando a mi comunidad y a otras personas. Mostrando y explicando que las personas con discapacidad tambi\u00e9n somos humanos. Tenemos los mismos deseos y necesidades que los dem\u00e1s.<\/p>\n

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

Vaya, siento que quiero copiar y pegar mi curr\u00edculum aqu\u00ed. \u00a1Ja, ja!<\/p>\n

He estudiado mucho a lo largo de los a\u00f1os, ya que he cambiado de carrera. Pas\u00e9 al menos 10 a\u00f1os estudiando arquitectura y dise\u00f1o de interiores y decoraci\u00f3n. Sin embargo, desde entonces he cambiado de carrera, ahora me dedico al asesoramiento y estoy estudiando arteterapia. Probablemente he hecho un total de 20 cursos a lo largo de los a\u00f1os. Algunos de estos cursos son s\u00f3lo de un d\u00eda, \u00a1que no cunda el p\u00e1nico! Tambi\u00e9n he hecho mucho voluntariado. Adem\u00e1s, soy defensora de los que tienen dificultades para hablar. He colaborado para que mi playa sea accesible en silla de ruedas. He recaudado fondos para comprar sillas de ruedas y colchonetas de playa. Tambi\u00e9n he trabajado duro para conseguir un cambiador. Y muchas cosas m\u00e1s.<\/p>\n

A lo largo de los a\u00f1os he hablado en p\u00fablico en actos y foros, he colaborado estrechamente con el Ayuntamiento y he estado en el Parlamento. Me han invitado a actos y foros y he ganado premios. Incluso tengo mi propio negocio. Esto es s\u00f3lo la punta del iceberg.<\/p>\n

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

Sin duda me ha influido. Las cosas que hago hoy se deben a mi LGMD. No creo que fuera la misma persona hoy si no fuera por esto.<\/p>\n

Soy mucho m\u00e1s paciente, abierto y realista, y comprendo que no todo viene sin desaf\u00edos. Aprecio las cosas que todav\u00eda puedo hacer, como dibujar o pintar, sabiendo que un d\u00eda puede que tambi\u00e9n pierda esa capacidad. Pero siempre tendr\u00e9 una mente fuerte. Puede que pierda la capacidad de hacer cosas f\u00edsicamente, pero tengo una mente fuerte y sana, \u00a1y voy a usarla hasta el d\u00eda de mi muerte!<\/p>\n

Creo que siempre he tenido un fuerte deseo de ayudar a la gente. Saber que con un poco de ayuda se llega muy lejos. Me estoy metiendo en el asesoramiento, y tal vez Arteterapia para ayudar a los necesitados.<\/p>\n

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

Bueno, eso es f\u00e1cil. \u00a1LA DISTROFIA MUSCULAR DE CINTURAS APESTA! La distrofia muscular de cinturas es una enfermedad que causa debilidad muscular. Tus m\u00fasculos se desgastan, no puedes ganar ni aumentar fuerza. Tus m\u00fasculos siguen deterior\u00e1ndose con el tiempo, lo que puede hacerte la vida extremadamente dif\u00edcil. Ning\u00fan tipo de ejercicio o levantamiento de pesas me ayudar\u00e1 a desarrollar los m\u00fasculos como cualquier Jo. Es el tipo de enfermedad que empeora con el tiempo. No hay cura ni medicamentos que ayuden.<\/p>\n

Esto dificulta la vida, sobre todo cuando los lugares no son accesibles en silla de ruedas. Es un obst\u00e1culo tras otro.<\/p>\n

Si su LGMD pudiera ser <\/strong>\"<\/strong>curado\" ma\u00f1ana, \u00bfqu\u00e9 ser\u00eda lo primero que querr\u00edas hacer<\/strong>?<\/p>\n

Abrazaba a mi madre y a mis hermanos. Hace a\u00f1os que perd\u00ed la capacidad de abrazar. Tambi\u00e9n saltar\u00eda y brincar\u00eda. Creo que me perder\u00eda. No sabr\u00eda ni por d\u00f3nde empezar ni qu\u00e9 hacer.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5507,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,35],"tags":[],"class_list":["post-5506","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2i"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Cyanne - 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=\"http:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2021\/09\/02\/cyanne\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Cyanne - 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