{"id":1293,"date":"2016-08-17T12:31:33","date_gmt":"2016-08-17T17:31:33","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1293"},"modified":"2016-08-17T12:31:33","modified_gmt":"2016-08-17T17:31:33","slug":"melanie","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2016\/08\/17\/melanie\/","title":{"rendered":"INDIVIDUO CON LGMD: Melanie"},"content":{"rendered":"

LGMD \"Entrevista en primer plano\"<\/p>\n

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NOMBRE<\/strong>: Melanie \u00a0 EDAD<\/strong>: 33\"LGMD2B<\/a><\/div>\n<\/div>\n
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PA\u00cdS:<\/strong> EE.UU.<\/span><\/span><\/div>\n<\/div>\n
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Subtipo LGMD<\/strong>: LGMD2b (Disferlinopat\u00eda\/miopat\u00eda de Miyoshi) <\/span><\/span><\/div>\n<\/div>\n
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\u00a0<\/span><\/strong><\/div>\n<\/div>\n
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A QU\u00c9 EDAD LE DIAGNOSTICARON:<\/strong><\/div>\n<\/div>\n
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Me lo diagnosticaron una semana antes de cumplir 29 a\u00f1os.<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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CU\u00c1LES FUERON SUS PRIMEROS S\u00cdNTOMAS: <\/span><\/span><\/strong><\/div>\n<\/div>\n
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No pod\u00eda levantarme sobre los dedos de los pies, ten\u00eda dedos en martillo (deformidad del pie) y sufr\u00eda dolor y fatiga todo el tiempo.<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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\u00bfTIENE OTROS MIEMBROS DE LA FAMILIA QUE PADEZCAN ALGODISTROFIA?<\/strong> <\/span><\/span><\/div>\n<\/div>\n
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\u00a1No, ni uno!<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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\u00bfCU\u00c1L CREE QUE ES EL MAYOR RETO DE VIVIR CON LA DGML? <\/span><\/span><\/strong><\/div>\n<\/div>\n
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Perder la capacidad de realizar las tareas y actividades cotidianas ha hecho que la vida sea todo un reto. Hay que planificar todo con antelaci\u00f3n. Tambi\u00e9n resulta dif\u00edcil cuando la gente no comprende este hecho. Cuando no pareces enfermo, la gente no se toma en serio tus necesidades.<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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\u00bfCU\u00c1L ES SU MAYOR LOGRO? <\/span><\/span><\/strong><\/div>\n<\/div>\n
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Obtener mi m\u00e1ster y conseguir un gran trabajo en el Gobierno Federal (estando enfermo todos los d\u00edas).<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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\u00bfC\u00d3MO TE HA INFLUIDO LA ALGMD PARA CONVERTIRTE EN LA PERSONA QUE ERES HOY? <\/span><\/span><\/strong><\/div>\n<\/div>\n
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Cuando me diagnosticaron la enfermedad, me sent\u00ed sola y desamparada. No conoc\u00eda a ninguna otra persona con esta forma de DM y ten\u00eda miedo. En lugar de enfurru\u00f1arme o dejar que esto me deprimiera, pens\u00e9 \"\u00bfpor qu\u00e9 no salir y hacer algo al respecto?\". As\u00ed que empec\u00e9 a investigar sobre la MDA y c\u00f3mo recaudar fondos. Form\u00e9 un equipo para la Marcha Muscular de la MDA y desde entonces participo todos los a\u00f1os. Entonces decid\u00ed que har\u00eda todo lo que pudiera mientras pudiera (ya que estoy perdiendo la capacidad de andar). Y as\u00ed lo hice. He viajado por todas partes y a algunos lugares sola. Incluso he hecho paracaidismo. Creo que este diagn\u00f3stico me ha convertido en una persona a\u00fan m\u00e1s positiva. Sin duda, me ha hecho una persona a\u00fan m\u00e1s fuerte. Muchas de las experiencias que he tenido en los \u00faltimos 4 a\u00f1os son el resultado directo de haberme enfrentado a la LGMD y de haber demostrado que las probabilidades eran err\u00f3neas.<\/div>\n<\/div>\n
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\u00a0<\/span><\/strong><\/div>\n<\/div>\n
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\u00bfQU\u00c9 QUIERE QUE EL MUNDO SEPA SOBRE LA DGM?<\/span><\/span><\/strong><\/div>\n<\/div>\n
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En primer lugar, no nos define. Somos quienes somos, y lo \u00fanico que tenemos es esta horrible enfermedad. Segundo, que tengamos buen aspecto no significa que nos sintamos bien. Tercero, la distrofia muscular no es esclerosis m\u00faltiple.<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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SI SU ALGMD PUDIERA \"CURARSE\" MA\u00d1ANA, \u00bfQU\u00c9 SER\u00cdA LO PRIMERO QUE HAR\u00cdA?<\/span><\/span><\/strong><\/div>\n<\/div>\n
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Baila como sol\u00eda hacer yo. Luego ir de excursi\u00f3n a todos los Parques Nacionales y hacer un mont\u00f3n de fotos incre\u00edbles. Luego correr un marat\u00f3n o hacer una carrera de obst\u00e1culos.<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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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 <\/span><\/span><\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"

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