\u00bfA qu\u00e9 edad le diagnosticaron<\/strong>:<\/p>\nA los 4 a\u00f1os me diagnosticaron LGMD, pero se desconoc\u00eda el subtipo. A los 23 a\u00f1os me hice una prueba de ADN, que era relativamente nueva en Holanda, y fue entonces cuando descubrieron que ten\u00eda LGMD tipo 1B.<\/p>\n
\u00bfCu\u00e1les fueron sus primeros s\u00edntomas?<\/strong>:<\/p>\nMi madre se dio cuenta de que me costaba subir las escaleras. Mi hermana tiene 1 a\u00f1o y 9 meses menos y ya pod\u00eda subir escaleras, pero yo segu\u00eda teniendo que utilizar los brazos para ayudarme a subirlas. Tambi\u00e9n nac\u00ed con heterocrom\u00eda iridiana (dos ojos de color (con un ojo ciego)) y un palato cisis (una abertura en el paladar), as\u00ed que mis padres pensaron que ten\u00eda algo m\u00e1s.<\/p>\n
\u00bfTiene otros familiares que padezcan LGMD?<\/strong><\/p>\nNo, hasta ahora soy la \u00fanica. Buscamos en nuestro historial pero no pudimos encontrar nada que dijera que otros miembros de la familia tuvieran LGMD.<\/p>\n
\u00bfCu\u00e1les crees que son los mayores retos de vivir con LGMD?<\/strong>:<\/p>\nEl mayor reto es tener que aceptar todas las p\u00e9rdidas relacionadas con las cosas f\u00edsicas que ya no puedo hacer. A veces va tan deprisa que mi cabeza no da abasto.<\/p>\n
\u00bfCu\u00e1l es su mayor logro?<\/strong>:<\/p>\nMis mayores logros son terminar la universidad, encontrar a mi alma gemela y comprar una casa juntos.<\/p>\n
\u00bfC\u00f3mo le ha influido la LGMD para convertirse en la persona que es hoy?<\/strong><\/p>\nRealmente no lo s\u00e9 porque no s\u00e9 c\u00f3mo es no tener LGMD. Tengo mucha paciencia. Tal vez se deba a todas las esperas que tenemos que hacer para conseguir las cosas que necesitamos para funcionar en nuestras vidas.... ya sabes, cosas como sillas de ruedas y otras cosas.<\/p>\n
\u00bfQu\u00e9 quiere que el mundo sepa sobre la LGMD?<\/strong>:<\/p>\nLa LGMD es una enfermedad muy frustrante. Las personas que viven con LGMD se enfrentan a p\u00e9rdidas d\u00eda tras d\u00eda.<\/p>\n
Si su LGMD pudiera \"curarse\" ma\u00f1ana, \u00bfqu\u00e9 ser\u00eda lo primero que desear\u00eda hacer?<\/strong>:<\/p>\nSi pudiera curarme ma\u00f1ana, bailar\u00eda con mi novio en una discoteca toda la noche. Y me ir\u00eda de vacaciones de excursi\u00f3n.<\/p>","protected":false},"excerpt":{"rendered":"
05\/15\/2015 Name:\u00a0 Marjolein\u00a0\u00a0 Age: 27 yrs. old Country: \u00a0\u00a0The Netherlands […]<\/p>","protected":false},"author":1,"featured_media":663,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,44],"tags":[42,43,17],"class_list":["post-662","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd1b","tag-laminopathy","tag-lgmd1b","tag-netherlands"],"acf":[],"yoast_head":"\n
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![\"LGMD1B](\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2015\/05\/LGMD1B-Marjolein.png\")
<\/a><\/p>\n