{"id":1163,"date":"2016-03-28T17:23:19","date_gmt":"2016-03-28T22:23:19","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1163"},"modified":"2016-03-28T17:23:19","modified_gmt":"2016-03-28T22:23:19","slug":"emily","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2016\/03\/28\/emily\/","title":{"rendered":"INDIVIDUO CON LGMD: Emily"},"content":{"rendered":"

03\/28\/2016<\/strong><\/p>\n

LGMD \"ENTREVISTA EN PRIMER PLANO\"<\/strong><\/p>\n

Nombre:<\/strong>\u00a0 Emily\u00a0\u00a0\u00a0\u00a0 Edad<\/strong>29 a\u00f1os\"LGMD2B<\/a><\/p>\n

Pa\u00eds<\/strong>: Reino Unido<\/p>\n

Subtipo LGMD<\/strong>: LGMD2B<\/p>\n

 <\/p>\n

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

Recib\u00ed la confirmaci\u00f3n de mi diagn\u00f3stico de LGMD2B a los 28 a\u00f1os, pero a los 24 ya se sospechaba.<\/p>\n

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

Mi primer s\u00edntoma fue que me costaba subir escaleras y tambi\u00e9n not\u00e9 que no pod\u00eda ponerme de puntillas para alcanzar los libros de mi estanter\u00eda.<\/p>\n

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

No, soy yo, \u00a1yo solo!<\/p>\n

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

Hay muchos retos. Como intentar que me acepten como \"discapacitada\" cuando no uso silla de ruedas. La gente no quiere hablar conmigo sobre el tema en general, \u00a1y eso puede aislarme mucho! A veces me siento cohibida y ansiosa. Caerme delante de la gente es lo peor y luchar por hacer cosas que antes pod\u00eda hacer es bastante triste. Echo de menos poder correr. Tambi\u00e9n la necesidad de intentar explicarte. A veces me tambaleo y me siento pat\u00e9tica o d\u00e9bil.<\/p>\n

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

De momento, me voy de casa y vivo de forma independiente en el campo. Tambi\u00e9n soy voluntaria de Muscular Dystrophy UK como compa\u00f1era de apoyo, lo que para m\u00ed es un logro incre\u00edble.<\/p>\n

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

Definitivamente, tener LGMD me ha dado una perspectiva diferente. He aprendido a apreciar las peque\u00f1as cosas de la vida y estoy m\u00e1s decidida a conseguir cosas a cualquier escala. Me siento muy positiva y quiero darle la vuelta a mi diagn\u00f3stico para centrarme en las cosas buenas y no en las malas. Me ha hecho m\u00e1s consciente y emp\u00e1tica, quiero ayudar a otros como yo. Tambi\u00e9n ha contribuido a mi \"malvado\" sentido del humor.<\/p>\n

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

Todo. S\u00f3lo quiero que la gente entienda la complejidad de estas afecciones y de la propia enfermedad.<\/p>\n

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

Es una pregunta dif\u00edcil, \u00a1hay tantas!<\/p>\n

Probablemente me gustar\u00eda correr primero, pero tambi\u00e9n subirme a una moto deportiva y aprender a conducir.<\/p>\n

 <\/p>\n

Para leer m\u00e1s \"LGMD Spotlight Interviews\" o presentarse voluntario para una pr\u00f3xima entrevista, visite nuestro sitio web:\u00a0 https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

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