{"id":3769,"date":"2020-12-03T09:38:38","date_gmt":"2020-12-03T15:38:38","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3769"},"modified":"2024-02-09T14:24:25","modified_gmt":"2024-02-09T14:24:25","slug":"individual-with-lgmd-saira","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2020\/12\/03\/individual-with-lgmd-saira\/","title":{"rendered":"INDIVIDUO CON LGMD - Saira"},"content":{"rendered":"<div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-1 fusion-flex-container nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-content-wrap\" style=\"max-width:1456px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-0 fusion_builder_column_1_1 1_1 fusion-flex-column\" style=\"--awb-bg-size:cover;--awb-width-large:100%;--awb-margin-top-large:0px;--awb-spacing-right-large:1.92%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:1.92%;--awb-width-medium:100%;--awb-spacing-right-medium:1.92%;--awb-spacing-left-medium:1.92%;--awb-width-small:100%;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\"><div class=\"fusion-column-wrapper fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-text fusion-text-1\"><p><strong><a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2020\/12\/LGMD2B-Saira-S.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-3772 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\/2020\/12\/LGMD2B-Saira-S-300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/strong><\/p>\n<p><strong>Nombre<\/strong>:  Saira<\/p>\n<p><strong>Edad<\/strong>: 29<\/p>\n<p><strong>Pa\u00eds<\/strong>: Indio residente en EAU<\/p>\n<p><strong>Subtipo LGMD<\/strong> (si se conoce): LGMD 2B\/R2 Relacionado con la disferlina<\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p><strong>\u00bfA qu\u00e9 edad le diagnosticaron<\/strong>:<\/p>\n<p>Me diagnosticaron a los 16 a\u00f1os. Recib\u00ed la confirmaci\u00f3n gen\u00e9tica en febrero de 2020.<\/p>\n<p><strong>\u00bfCu\u00e1les fueron sus primeros s\u00edntomas?<\/strong>:<\/p>\n<p>Caerse de repente y levantarse de estar sentado en el suelo fueron los primeros s\u00edntomas.<\/p>\n<p><strong>\u00bfTiene otros familiares que padezcan LGMD? <\/strong><\/p>\n<p>No, ninguno de mis familiares tiene LGMD. Soy el \u00fanico al que se le ha diagnosticado LGMD.<\/p>\n<p><strong>\u00bfCu\u00e1les cree que son los mayores retos de vivir con LGMD?<\/strong><\/p>\n<p>Barreras medioambientales y accesibilidad de las sillas de ruedas. Oportunidades de empleo sin el estigma asociado a las capacidades que tengo.  Falta de neur\u00f3logos interesados en la LGMD y respuesta r\u00e1pida al diagn\u00f3stico. Progresi\u00f3n de la LGMD y c\u00f3mo afrontar los continuos retos asociados a la enfermedad. Poca o ninguna orientaci\u00f3n sobre los tipos de equipos que podr\u00edan ser \u00fatiles para las actividades cotidianas.<\/p>\n<p><strong>\u00bfCu\u00e1l es su mayor logro?<\/strong>:<\/p>\n<p>Empec\u00e9 un nuevo trabajo en una empresa de los Emiratos \u00c1rabes Unidos y me dejaron trabajar desde casa como un alojamiento accesible para incluirme. Ahora trabajo cada d\u00eda en Inclusive para crear un impacto global y hacer este mundo m\u00e1s accesible Online y Offline.<\/p>\n<p><strong>\u00bfC\u00f3mo le ha influido la LGMD para convertirse en la persona que es hoy? <\/strong><\/p>\n<p>Me ha dado una nueva perspectiva de la vida y me ha hecho valorar mi tiempo y mis capacidades actuales.<\/p>\n<p>Puede que no sea capaz de hacer todo f\u00edsicamente como cualquier otra persona, pero eso no significa que no tenga nada que aportar para influir en el mundo que todos compartimos por igual.<\/p>\n<p>La LGMD me ha ense\u00f1ado a estar agradecida a mi familia m\u00e1s que antes por su apoyo constante.<\/p>\n<p>Me ha hecho vivir y amar cada momento cada vez m\u00e1s.<\/p>\n<p>Como es una enfermedad degenerativa, progresa, las cosas que puedo hacer hoy, pueden no ser las que podr\u00eda hacer el a\u00f1o que viene. As\u00ed que intento disfrutar de cada movimiento f\u00edsico que puedo hacer hoy, ahora mismo. Desde peinarme hasta prepararme una taza de t\u00e9, lo valoro.<\/p>\n<p><strong>\u00bfQu\u00e9 quiere que el mundo sepa sobre la LGMD?<\/strong>:<\/p>\n<p>Quiero que el mundo sepa que se trata de una enfermedad rara. Le puede pasar a cualquiera. Podr\u00eda ser a ti, que est\u00e1s leyendo esto, o a alguien que tal vez no conozcas y que podr\u00eda estar viviendo con esto. Pero hay gente que vive con esta enfermedad que desgasta los m\u00fasculos y que espera su cura. Puedo poner como ejemplo la pandemia y c\u00f3mo los cient\u00edficos de todo el mundo se apresuran a encontrar una vacuna. Mientras que en el caso de la LGMD, la investigaci\u00f3n lleva d\u00e9cadas sin resultados, la falta de fondos o la falta de apoyo gubernamental son algunas de las razones. Desde los s\u00edntomas hasta el diagn\u00f3stico, pasando por el d\u00eda en que acept\u00e9 la LGMD y empec\u00e9 a vivir con ella, ha sido un viaje solitario. El apoyo de mi marido, mi familia y mis amigos es lo que me da valor cada d\u00eda. La falta de especialistas y de conocimientos adecuados sobre la enfermedad es algo a lo que me enfrento en cada visita al m\u00e9dico. Necesitamos empat\u00eda en un entorno sin barreras. Ayer caminaba y hoy necesito una silla de ruedas. La justificaci\u00f3n de mi enfermedad ser\u00eda m\u00e1s f\u00e1cil si la gente conociera la LGMD.<\/p>\n<p><strong>Si su LGMD pudiera \"curarse\" ma\u00f1ana, \u00bfqu\u00e9 ser\u00eda lo primero que desear\u00eda hacer?<\/strong>:<\/p>\n<p>La pregunta a la que respondo es hipot\u00e9tica. C\u00f3mo me gustar\u00eda haberla respondido como si fuera pr\u00e1ctica y espero el d\u00eda con positividad y esperanza.<\/p>\n<p>El d\u00eda tal vez est\u00e9 lejos, o podr\u00eda ser pronto. Me encantar\u00eda arrodillarme y rezar como quiero, como hacemos en mi creencia religiosa. Me encantar\u00eda bailar y patinar, cosa que ya no puedo hacer porque vivo con LGMD. Deseo conducir un coche. Anhelo volver a ser independiente.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":3836,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[],"class_list":["post-3769","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>INDIVIDUAL WITH LGMD - Saira - 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\/2020\/12\/03\/individual-with-lgmd-saira\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD - Saira - LGMD Awareness Foundation\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2020\/12\/03\/individual-with-lgmd-saira\/\" \/>\n<meta property=\"og:site_name\" content=\"LGMD Awareness Foundation\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/LGMDawareness\/\" \/>\n<meta property=\"article:published_time\" content=\"2020-12-03T15:38:38+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2024-02-09T14:24:25+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/02\/LGMD2B-Saira-S.png\" \/>\n\t<meta property=\"og:image:width\" content=\"1280\" \/>\n\t<meta property=\"og:image:height\" content=\"720\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"dooley\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@LgmdAwareness\" \/>\n<meta name=\"twitter:site\" content=\"@LgmdAwareness\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"dooley\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"5 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2020\/12\/03\/individual-with-lgmd-saira\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/www.lgmd-info.org\/pt\/individuals-with-lgmd-interviews\/2020\/12\/03\/individual-with-lgmd-saira\/\"},\"author\":{\"name\":\"dooley\",\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#\/schema\/person\/007755074875959ad5503c1c969678c7\"},\"headline\":\"INDIVIDUAL WITH LGMD &#8211; 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