\u00bfCU\u00c1L CREE QUE ES EL MAYOR RETO DE VIVIR CON LGMD?<\/strong>:<\/p>\nMe cuesta tener energ\u00eda suficiente para hacer las cosas que quiero y necesito hacer durante el d\u00eda. Intento planificar mi d\u00eda con antelaci\u00f3n para saber qu\u00e9 y c\u00f3mo utilizar mi energ\u00eda durante el d\u00eda. Las cosas o tareas inesperadas son a veces un problema.<\/p>\n
Los largos inviernos tambi\u00e9n son un reto. En invierno permanezco en casa todo lo que puedo. S\u00f3lo salgo cuando es realmente necesario. Mi hijo lo entiende, pero no siempre es agradable para \u00e9l que no podamos jugar fuera o pasar m\u00e1s tiempo al aire libre en invierno. Cuando hay escarcha o nieve me quedo a\u00fan m\u00e1s en casa porque tengo miedo de caerme.<\/p>\n
Debido a la LGMD, a veces parezco tener mal genio...<\/p>\n
\u00bfCU\u00c1L ES SU MAYOR LOGRO?<\/strong>:<\/p>\nUno de mis mayores logros es haberme trasladado de Holanda a Dinamarca hace 15 a\u00f1os. Tengo una buena mujer y un hijo de 7 a\u00f1os (casi 8). Tambi\u00e9n tengo un trabajo en el que puedo trabajar 20 horas a la semana. (Dinamarca intenta ayudar a los discapacitados en lo que puede).<\/p>\n
\u00bfC\u00d3MO TE HA INFLUIDO LA ALGMD PARA CONVERTIRTE EN LA PERSONA QUE ERES HOY?<\/strong><\/p>\nTodav\u00eda puedo andar, y mi m\u00e9dico me ha dicho que podr\u00e9 hacerlo para siempre J, pero a veces estoy un poco inestable y ando \"raro\".<\/p>\n
Tengo que planificar mis d\u00edas, planificar mi energ\u00eda, si hay algo diferente como una cita tengo que saberlo con d\u00edas de antelaci\u00f3n. De lo contrario, lo tomo como viene, un d\u00eda a la vez.<\/p>\n
\u00bfQU\u00c9 QUIERE QUE EL MUNDO SEPA SOBRE LA DGML?<\/strong>:<\/p>\nQuiero que el mundo sepa que la distrofia muscular de cinturas existe y que es una enfermedad rara. La forma de LGMD que yo tengo, LGMD tipo 2A, es bastante rara. En Dinamarca se calcula que s\u00f3lo el 6% de los pacientes con LGMD est\u00e1n diagnosticados de LGMD2A.<\/p>\n
SI MA\u00d1ANA SE PUDIERA \"CURAR\" SU DGML, \u00bfQU\u00c9 SER\u00cdA LO PRIMERO QUE QUERR\u00cdA HACER?<\/strong>:<\/p>\n\u00a1Correr! Hace muchos a\u00f1os que no puedo correr o que no soy estable al andar.<\/p>\n
<\/p>","protected":false},"excerpt":{"rendered":"
04\/14\/2015 NAME:\u00a0 Freddy \u00a0\u00a0AGE: 49 Yrs. Old COUNTRY:\u00a0 Denmark LGMD […]<\/p>","protected":false},"author":1,"featured_media":599,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[37,15],"class_list":["post-598","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-denmark","tag-lgmd2a"],"acf":[],"yoast_head":"\n
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<\/a><\/p>\n