{"id":1112,"date":"2016-01-18T11:30:03","date_gmt":"2016-01-18T17:30:03","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1112"},"modified":"2016-01-18T11:30:03","modified_gmt":"2016-01-18T17:30:03","slug":"laurence","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2016\/01\/18\/laurence\/","title":{"rendered":"INDIVIDUO CON LGMD: Laurence"},"content":{"rendered":"

\"ENTREVISTA DE LGMD SPOTLIGHT\" <\/strong>– 01\/18\/2016<\/em><\/p>\n

Nombre<\/strong>: Laurence \u00a0\u00a0\u00a0Edad<\/strong>: 49\"LGMD2A<\/a><\/p>\n

Pa\u00eds<\/strong>: Francia<\/p>\n

Subtipo LGMD<\/strong>: LGMD2A \/ Calpainopat\u00eda<\/p>\n

 <\/p>\n

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

Me lo diagnosticaron a los 42 a\u00f1os.<\/p>\n

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

Los s\u00edntomas que experimentaba eran: gran fatiga, dificultades para subir escaleras, ca\u00eddas al caminar por un terreno irregular y dificultad para levantarse de una posici\u00f3n sentada.<\/p>\n

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

No, soy el \u00fanico miembro de la familia con LGMD2A.<\/strong><\/p>\n

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

La evoluci\u00f3n es bastante lenta pero debo tener mucho cuidado de tener una vida regular de lo contrario es peor y la evoluci\u00f3n es entonces m\u00e1s r\u00e1pida cuando estoy cansado y la atrofia es m\u00e1s fuerte. Es dif\u00edcil conciliarlo con las actividades privadas o profesionales.<\/p>\n

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

Intento seguir trabajando, lo cual es importante, no pensar demasiado en la enfermedad y seguir adelante.<\/p>\n

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

En la lucha contra los dolores y las dificultades f\u00edsicas, la enfermedad me ense\u00f1a a priorizar, pero tambi\u00e9n a ser consciente de que siempre hay\u00a0 <\/strong>gente que est\u00e1 m\u00e1s enferma que t\u00fa, as\u00ed que debes ser optimista.<\/p>\n

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

Quiero que el mundo sepa que la LGMD forma parte de las enfermedades hu\u00e9rfanas, por lo que es dif\u00edcil recaudar los fondos necesarios para encontrar un tratamiento eficaz. Es importante hablar de la LGMD a nuestro alrededor, pero sobre todo a la comunidad m\u00e9dica y a los m\u00e9dicos de cabecera, que pueden ayudar a sus pacientes a acudir a los centros m\u00e9dicos adecuados. Tengo un ejemplo muy personal para ilustrar este punto - \u00a1\u00a1\u00a1antes de ser diagnosticado, mi m\u00e9dico de cabecera me dijo que mis s\u00edntomas se deb\u00edan a un ataque de nervios!!!<\/p>\n

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

Me gustar\u00eda caminar con naturalidad sin bast\u00f3n y visitar el mundo entero, poder ir al extranjero con mi familia, \u00a1sentirme libre!<\/p>\n

Para leer m\u00e1s \"LGMD Spotlight Interviews\" o presentarse voluntario para una pr\u00f3xima entrevista, visite nuestro sitio web: https:\/\/www.lgmd-info.org\/spotlight-interviews<\/p>","protected":false},"excerpt":{"rendered":"

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