{"id":7666,"date":"2023-04-02T16:22:56","date_gmt":"2023-04-02T16:22:56","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=7666"},"modified":"2024-02-09T14:23:49","modified_gmt":"2024-02-09T14:23:49","slug":"individual-with-lgmd-jacob","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/lgmd2d\/2023\/04\/02\/individual-with-lgmd-jacob\/","title":{"rendered":"INDIVIDUO CON LGMD: Jacob"},"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> <img decoding=\"async\" class=\"lazyload aligncenter size-medium wp-image-6107\" 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\/2023\/04\/LGMD2D-Jacob-D-300x169.png\" alt=\" \" width=\"300\" height=\"169\" \/><\/strong><\/p>\n<p><strong>Nombre<\/strong>:  Jacob<\/p>\n<p><strong>Edad<\/strong>: 6 a\u00f1os<\/p>\n<p><strong>Pa\u00eds<\/strong>:  Estados Unidos<\/p>\n<p><strong>Subtipo LGMD<\/strong>:  LGMD2D \/ R3<\/p>\n<p>* * * <em>Completado por los padres de Jacob, Josh y Rachel<\/em><\/p>\n<p><strong>\u00bfA qu\u00e9 edad le diagnosticaron<\/strong>?<\/p>\n<p>A Jacob le diagnosticaron LGMD2D \/ R3 cuando ten\u00eda 5 a\u00f1os.<\/p>\n<p><strong>\u00a0<\/strong><strong>\u00bfCu\u00e1les fueron sus primeros s\u00edntomas?<\/strong><\/p>\n<p>Descubrimos el diagn\u00f3stico de Jacob tras un caso de rabdomi\u00f3lisis durante el verano de 2021. En la actualidad, sus principales s\u00edntomas son se\u00f1ales ocasionales similares a las de la rabdomi\u00f3lisis, como orina oscura y dolor en las piernas cuando realiza demasiada actividad sin hidratarse lo suficiente.<\/p>\n<p><strong>\u00a0<\/strong><strong>\u00bfTiene otros familiares con LGMD?<\/strong><\/p>\n<p>No tenemos ning\u00fan otro familiar que padezca LGMD u otras formas de distrofia muscular.<\/p>\n<p><strong>\u00bfCu\u00e1les crees que son los mayores retos de vivir con LGMD?<\/strong>?<\/p>\n<p>La preocupaci\u00f3n constante por la evoluci\u00f3n de Jacob mientras esperamos un tratamiento o una cura muy necesarios, y sin saber cu\u00e1ndo llegar\u00e1 ese tratamiento o esa cura. Tenemos que recordarle constantemente a Jacob lo importante que es mantenerse hidratado a diario; bebe unas 48 onzas de agua al d\u00eda desde el incidente inicial de rabdomi\u00f3lisis. Eso es mucho para cualquiera, \u00a1y mucho m\u00e1s para un ni\u00f1o de 6 a\u00f1os! Tampoco permitimos que Jacob practique deportes de equipo en este momento por recomendaci\u00f3n de los m\u00e9dicos y por miedo a forzar sus m\u00fasculos y acelerar su progresi\u00f3n. Est\u00e1 en una edad en la que todos sus amigos juegan en equipos deportivos durante todo el a\u00f1o. Ese sentido de compa\u00f1erismo, deportividad y uni\u00f3n con los compa\u00f1eros es fundamental a esta edad y a medida que crece. Es desgarrador como padres ver a tu hijo enfrentarse a estas luchas.<\/p>\n<p><strong>\u00bfCu\u00e1l es su mayor logro?<\/strong><\/p>\n<p>El mayor logro actual de Jacob es que no se rinde. Es un chico fuerte, inteligente y decidido que siempre da lo mejor de s\u00ed mismo y se esfuerza al m\u00e1ximo. Se enorgullece de que \u00e9ste sea uno de sus rasgos m\u00e1s fuertes y le gusta describirse a s\u00ed mismo como \"feroz\".<\/p>\n<p><strong>\u00bfC\u00f3mo le ha influido la LGMD para convertirse en la persona que es hoy?<\/strong><\/p>\n<p>La LGMD ha influido en Jacob desde su diagn\u00f3stico. Es m\u00e1s consciente de escuchar a su cuerpo cuando necesita un descanso. No tiene miedo de pedir a sus profesores un descanso si lo necesita, especialmente en educaci\u00f3n f\u00edsica y en el recreo. Sus profesores nos han comentado lo orgullosos e impresionados que est\u00e1n de que haga esto a una edad tan temprana.<\/p>\n<p>Para nosotros, sus padres, tenemos un nuevo impulso y prop\u00f3sito: ayudar a toda la comunidad LGMD, incluido Jacob, a conseguir los tratamientos que cada paciente necesita y merece. Nos hemos convertido en defensores para ayudar a concienciar sobre esta enfermedad rara y nos dedicamos a ayudar a la comunidad en todo lo que podemos.<\/p>\n<p><strong>\u00bfQu\u00e9 quiere que el mundo sepa sobre la LGMD?<\/strong>?<\/p>\n<p>Queremos que el mundo sepa que la LGMD es una enfermedad cr\u00edtica y rara que necesita desesperadamente tratamientos y una cura lo antes posible. Esta enfermedad empeora con el tiempo, por lo que el tiempo es esencial. La concienciaci\u00f3n sobre esta enfermedad es clave para impulsar esta misi\u00f3n. Cuanta m\u00e1s gente conozca la enfermedad y su gravedad, m\u00e1s investigaci\u00f3n y ensayos cl\u00ednicos se llevar\u00e1n a cabo. Nuestros seres queridos necesitan opciones de tratamiento al igual que otras personas que padecen enfermedades raras y no raras.<\/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>A Jacob le gustar\u00eda poder jugar al baloncesto en un equipo local. Si se curara ma\u00f1ana, querr\u00eda practicar deportes de equipo sin tener que preocuparse por la ingesta excesiva de agua, por que le duelan las piernas por ser demasiado activo o por otro caso de rabdomi\u00f3lisis.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":7668,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,28],"tags":[29,122,16],"class_list":["post-7666","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2d","tag-lgmd2d","tag-lgmdr3","tag-united-states"],"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: Jacob - 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\/lgmd2d\/2023\/04\/02\/individual-with-lgmd-jacob\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Jacob - 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