{"id":8006,"date":"2024-04-19T15:18:17","date_gmt":"2024-04-19T15:18:17","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=8006"},"modified":"2024-04-19T15:27:01","modified_gmt":"2024-04-19T15:27:01","slug":"8006","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2024\/04\/19\/8006\/","title":{"rendered":"INDIVIDUO CON LGMD: Amanda"},"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-blend:overlay;--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><img decoding=\"async\" class=\"lazyload aligncenter wp-image-8005 size-medium\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/04\/LGMD2B-Amanda-N-300x169.png\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/04\/LGMD2B-Amanda-N-300x169.png\" alt=\"\" width=\"300\" height=\"169\" srcset=\"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-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/04\/LGMD2B-Amanda-N-200x113.png 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/04\/LGMD2B-Amanda-N-300x169.png 300w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/04\/LGMD2B-Amanda-N-400x225.png 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/04\/LGMD2B-Amanda-N-600x338.png 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/04\/LGMD2B-Amanda-N-768x432.png 768w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/04\/LGMD2B-Amanda-N-800x450.png 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/04\/LGMD2B-Amanda-N-1024x576.png 1024w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/04\/LGMD2B-Amanda-N-1200x675.png 1200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/04\/LGMD2B-Amanda-N.png 1280w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 300px) 100vw, 300px\" \/><\/p>\n<p><strong>Nombre<\/strong>: Amanda<\/p>\n<p><strong>Edad<\/strong>: 26<\/p>\n<p><strong>Pa\u00eds<\/strong>: EE.UU.<\/p>\n<p><strong>Subtipo LGMD<\/strong>: LGMD2B\/R2 Relacionado con la disferlina<\/p>\n<p><strong>\u00bfA qu\u00e9 edad le diagnosticaron<\/strong>?<\/p>\n<p>Me lo diagnosticaron a los 14 a\u00f1os.<\/p>\n<p><strong>\u00bfCu\u00e1les fueron sus primeros s\u00edntomas?<\/strong><\/p>\n<p>Mis primeros s\u00edntomas no se produjeron hasta los 20 a\u00f1os m\u00e1s o menos. Fue entonces cuando empec\u00e9 a notar realmente los primeros s\u00edntomas de debilidad\/atrofia muscular. Lo notaba sobre todo en situaciones en las que utilizaba la mitad inferior del cuerpo, como escaleras o sentadillas. Para mi sorpresa, tambi\u00e9n me dol\u00edan mucho las rodillas. Ahora s\u00e9 que tambi\u00e9n hay atrofia muscular en ellas.<\/p>\n<p><strong>\u00bfTiene otros familiares con LGMD?<\/strong><strong>?<\/strong><\/p>\n<p>Yo no.<\/p>\n<p><strong>\u00bfCu\u00e1les crees que son los mayores retos de vivir con LGMD?<\/strong>?<\/p>\n<p>Mis mayores retos han cambiado mucho en los \u00faltimos a\u00f1os. Tengo la suerte de seguir deambulando, aunque tengo problemas de movilidad.<\/p>\n<p>Por el momento, dir\u00eda que mi mayor reto <em>f\u00edsicamente<\/em> es la imprevisibilidad de mis brotes y mi dolor. La r\u00e1pida aparici\u00f3n de la fatiga, la rigidez y el dolor puede hacer que a veces sea muy dif\u00edcil trabajar y vivir la vida al m\u00e1ximo.<\/p>\n<p>Mis mayores retos <em>emocionalmente <\/em>ser\u00eda el misterio del futuro y si llegar\u00e9 a ver una cura durante mi vida. Esto se me pasa por la cabeza minuto a minuto. Tambi\u00e9n he luchado mucho a lo largo de los a\u00f1os para educar a mis equipos m\u00e9dicos sobre la LGMD. Aparte de mis especialistas, los dem\u00e1s m\u00e9dicos, enfermeras y personal sanitario no suelen tener ni idea de lo que es esta enfermedad, lo cual es incre\u00edblemente agotador desde el punto de vista del paciente.<\/p>\n<p><strong>\u00bfCu\u00e1l es su <\/strong><strong>\u00bfel mayor logro?<\/strong><\/p>\n<p>Cuando me diagnosticaron LGMD, tuve que dejar todos los deportes que practicaba, ya que los m\u00e9dicos estaban preocupados por mis niveles de CK y no sab\u00edan qu\u00e9 m\u00e1s da\u00f1o me estaba causando. La LGMD 2B todav\u00eda era incre\u00edblemente nueva en 2012. Yo era muy atl\u00e9tico, por lo que dejar los deportes me aplast\u00f3. Pero entonces decid\u00ed poner toda esa energ\u00eda en crear arte y hacer crecer mi amor por \u00e9l. Acab\u00e9 encontrando todo tipo de formas de arte que me interesaban, y luego termin\u00e9 realmente persiguiendo una como carrera.<\/p>\n<p><strong>\u00bfC\u00f3mo te ha influido la LGMD para convertirte en la persona que eres hoy?<\/strong><strong>?<\/strong><\/p>\n<p>Aparte de c\u00f3mo la LGMD ha influido en mi carrera, dir\u00eda que tambi\u00e9n ha cambiado mucho mi mentalidad. Por injusto que sea, y lo es MUCHO, las personas con LGMD no tienen m\u00e1s remedio que adaptar su mentalidad si quieren encontrar la felicidad en medio de esta enfermedad. Siempre estoy trabajando en mi salud mental en este \u00e1mbito, y he descubierto que la terapia y una comunidad de apoyo han cambiado mucho las cosas.<\/p>\n<p>As\u00ed que, hace poco, decid\u00ed lanzar un blog: <a href=\"http:\/\/HerChronicWellness.com\">HerChronicWellness.com<\/a> donde comparto momentos de mi viaje cr\u00f3nico para hacer que los viajes cr\u00f3nicos de los dem\u00e1s sean un poco m\u00e1s f\u00e1ciles. Tambi\u00e9n estoy empezando una secci\u00f3n de \"Destacados\", para que otros puedan compartir sus historias cr\u00f3nicas y consejos. No dudes en echarle un vistazo.<\/p>\n<p><strong>\u00bfQu\u00e9 quiere que el mundo sepa sobre la LGMD?<\/strong>?<\/p>\n<p>Quiero que el mundo sepa <em>todo<\/em> \u00a1sobre la LGMD! Pero sobre todo que el tiempo es esencial. Se trata de una enfermedad progresiva que no tiene cura. Todos los casos de LGMD son diferentes, y yo me considero un caso incre\u00edblemente afortunado. La gente est\u00e1 sufriendo y la \u00fanica forma de encontrar una cura es concienciar y educar a la gente de nuestras comunidades: nuestros m\u00e9dicos, nuestros compa\u00f1eros de trabajo, nuestros amigos y nuestras familias.<\/p>\n<p>Tambi\u00e9n me gustar\u00eda que el mundo supiera que, aunque la LGMD se ve diferente en cada persona, tambi\u00e9n se ve diferente <em>para<\/em> todo el mundo <em>todos los d\u00edas<\/em>. No puedo garantizar c\u00f3mo se sentir\u00e1 mi cuerpo ma\u00f1ana y no puedo prever c\u00f3mo evolucionar\u00e1 con el tiempo. Que hiciera algo ayer no significa que pueda hacerlo hoy. Por desgracia, mi cuerpo es m\u00e1s imprevisible que el de cualquier persona.<\/p>\n<p><strong>Si su LGMD pudiera ser <\/strong><strong>\"<\/strong><strong>curado\" ma\u00f1ana, \u00bfqu\u00e9 ser\u00eda lo primero que querr\u00edas hacer<\/strong>?<\/p>\n<p>No puedo decidirme, \u00a1porque hay tantas cosas que me gustar\u00eda hacer! Sin duda planear\u00eda un viaje para esquiar. Planear\u00eda un viaje de senderismo. Saldr\u00eda a correr con mi perro. Viajar\u00eda 11 horas por carretera para ir a ver a mi mejor amiga a Tennessee. Ir\u00eda a Disneylandia y me pasear\u00eda por todo el parque. Reservar\u00eda un vuelo a Nueva York y me pasear\u00eda todo el d\u00eda por la ciudad. Me apuntar\u00eda a una clase de gimnasia con mis amigos. Patinar\u00eda sobre hielo y aprender\u00eda a patinar. Har\u00eda todas las cosas que antes daba por sentadas, y muchas m\u00e1s.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":8005,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[23,124,16],"class_list":["post-8006","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2b","tag-lgmdr2","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: Amanda - 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\/2024\/04\/19\/8006\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Amanda - 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