{"id":3755,"date":"2020-11-15T14:15:25","date_gmt":"2020-11-15T20:15:25","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3755"},"modified":"2024-02-09T14:24:26","modified_gmt":"2024-02-09T14:24:26","slug":"individual-with-lgmd-neil","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2020\/11\/15\/individual-with-lgmd-neil\/","title":{"rendered":"INDIVIDUO CON LGMD: Neil"},"content":{"rendered":"

\"\"<\/a><\/p>\n

Nombre: Neil Kramer<\/strong><\/p>\n

Edad<\/strong>: \u00a050<\/p>\n

Pa\u00eds<\/strong>: Estados Unidos de Am\u00e9rica<\/p>\n

Subtipo LGMD<\/strong>: Desconocido<\/p>\n

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

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

Me lo diagnosticaron a los 47 a\u00f1os.<\/p>\n

\u00bfCu\u00e1les fueron sus primeros s\u00edntomas?<\/strong>: Empec\u00e9 a tener debilidad en las piernas, lo que provocaba ca\u00eddas frecuentes. Poco a poco not\u00e9 que me costaba mantener el equilibrio, levantarme de las sillas, subir escaleras y que las rodillas me fallaban y me provocaban ca\u00eddas. Un d\u00eda, hace 4 a\u00f1os, tuve una mala ca\u00edda y fui a urgencias. El m\u00e9dico me recomend\u00f3 que viera a un neur\u00f3logo. En mi primera visita, el m\u00e9dico me inform\u00f3 de que los problemas no se limitaban a las piernas, sino tambi\u00e9n a los brazos. Recuerdo que me sent\u00ed impotente y asustada. Tard\u00e9 varios meses en recibir un diagn\u00f3stico. Fueron meses, como m\u00ednimo, estresantes. Mientras me somet\u00eda a todas las pruebas con el neur\u00f3logo, mantuvimos numerosas conversaciones. Durante una visita, hablamos de mi infancia. De repente, los problemas que tuve de ni\u00f1a cobraron sentido.<\/p>\n

De ni\u00f1o, nunca pude hacer flexiones, dominadas, trepar por la cuerda en clase de gimnasia, correr muy r\u00e1pido, etc. Tampoco pod\u00eda levantar objetos pesados. Pensaba que solo era un ni\u00f1o nerd y d\u00e9bil. Me aficion\u00e9 a la m\u00fasica y me convert\u00ed en un empoll\u00f3n de los grupos musicales.<\/p>\n

Cuando me diagnosticaron distrofia muscular de cinturas, muchas cosas en mi vida parecieron cobrar sentido.<\/p>\n

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

No, no tengo ning\u00fan familiar que padezca LGMD. Supongo que mi caso es un misterio.<\/p>\n

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

Hago todo lo posible por moverme todo lo que puedo para ralentizar el avance de la enfermedad; sin embargo, noto que las piernas se me debilitan. Tengo que tener m\u00e1s cuidado para evitar las ca\u00eddas. Tengo que escuchar m\u00e1s a mi cuerpo para determinar cu\u00e1ndo necesito utilizar el andador o el scooter. S\u00e9 que no deber\u00eda avergonzarme, pero el reto es superar la verg\u00fcenza y ser quien soy. Los dispositivos de movilidad son una herramienta que me ayuda a seguir siendo independiente.<\/p>\n

Tambi\u00e9n empiezo a notar debilidad en la parte superior de los brazos. Me he centrado mucho en las piernas, pero empiezo a preocuparme por los retos futuros. El reto es conseguir no preocuparme por el futuro y disfrutar de cada d\u00eda. Tengo una familia maravillosa y un entorno laboral que me apoya y me ayuda a continuar mi exitosa carrera.<\/p>\n

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

Creo que mi mayor logro ha sido mi carrera en Servicios Sociales. Trabajo para una agencia llamada Centro Regional de San Diego (SDRC). Coordinamos los servicios para m\u00e1s de 32.000 personas con discapacidades de desarrollo y sus familias. El trabajo que hacemos para nuestra comunidad es incre\u00edble. Nuestros clientes son nuestra m\u00e1xima prioridad. Durante los \u00faltimos a\u00f1os, he estado trabajando como Enlace Legislativo para nuestra agencia. Debido a que nuestros fondos provienen del Estado de California, me he reunido frecuentemente con nuestros legisladores estatales y su personal para asegurar que nuestro sistema de prestaci\u00f3n de servicios para nuestros clientes y familias permanezcan intactos. Yo realmente nuestra defensa de nuestro sistema. Creo que nuestros esfuerzos han tenido mucho \u00e9xito.<\/p>\n

Ahora que me han diagnosticado LGMD, puedo identificarme con algunos de los clientes a los que atendemos que dependen de dispositivos de movilidad para su independencia. Mi diagn\u00f3stico no ha hecho sino aumentar mi pasi\u00f3n por la defensa, no solo de los clientes a los que atiendo en el SDRC, sino de TODAS las personas con discapacidad.<\/p>\n

\u00bfC\u00f3mo le ha influido la LGMD para convertirse en la persona que es hoy?<\/strong><\/p>\n

La LGMD, aunque muy dif\u00edcil, me ha hecho m\u00e1s consciente de las necesidades de las personas con discapacidad en nuestra comunidad. Como todos nosotros, tengo d\u00edas buenos y d\u00edas en los que siento las piernas y los brazos pesados y cansados. Intento superar los d\u00edas malos para asegurarme de que hago alguna actividad f\u00edsica que ralentice la progresi\u00f3n de la enfermedad. Me he hecho \"m\u00e1s fuerte\" emocionalmente porque no quiero que la LGMD me impida vivir mi vida. Estoy m\u00e1s decidida a defender la causa y hago todo lo que puedo para concienciar sobre la LGMD y todas las enfermedades que cursan con distrofia muscular.<\/p>\n

Siempre he ejercido una profesi\u00f3n relacionada con el servicio p\u00fablico. Siempre he tenido el deseo de presentarme a un cargo p\u00fablico. A pesar de LGMD, ahora soy candidata al Ayuntamiento de mi localidad. Una de mis principales prioridades es abogar por las personas con discapacidad y las personas mayores. Quiero garantizar un mejor acceso a nuestros espacios abiertos, parques y sistemas de senderos. La LGMD no me impedir\u00e1 cumplir mis sue\u00f1os.<\/p>\n

\u00bfQu\u00e9 quiere que el mundo sepa sobre la LGMD?<\/strong>: \u00a0<\/strong><\/p>\n

Quiero que el mundo sepa que hay algunas discapacidades que pasan desapercibidas. Todav\u00eda puedo andar e intento hacerlo siempre que puedo. Cuando siento las piernas cansadas\/pesadas, uso el andador. Para distancias largas o aglomeraciones, necesito mi scooter o silla de ruedas. Cuando utilizo el espacio para discapacitados y no necesito mi andador, a veces recibo miradas de la gente que no entiende por qu\u00e9 necesito el espacio. Tengo las piernas muy d\u00e9biles y corro el riesgo de caerme. No deber\u00eda sentirme avergonzado por tener que utilizar la plaza de aparcamiento para minusv\u00e1lidos.<\/p>\n

Quiero concienciar sobre la LGMD, recaudar dinero para la investigaci\u00f3n de la LGMD y abogar por todos los que padecemos la enfermedad.<\/p>\n

Si su LGMD pudiera \"curarse\" ma\u00f1ana, \u00bfqu\u00e9 ser\u00eda lo primero que desear\u00eda hacer?<\/strong>: \u00a0<\/strong><\/p>\n

Me encantar\u00eda poder patinar como hac\u00eda en el instituto, jugar al golf con mi hijo, jugar un partido de b\u00e9isbol y quiz\u00e1 aprender a hacer surf. Vivo en el sur de California.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":3837,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13],"tags":[],"class_list":["post-3755","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Neil - 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\/11\/15\/individual-with-lgmd-neil\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL 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