{"id":414,"date":"2015-01-18T22:10:12","date_gmt":"2015-01-19T04:10:12","guid":{"rendered":"http:\/\/mainstay-bg.com\/wp\/?p=148"},"modified":"2015-01-18T22:10:12","modified_gmt":"2015-01-19T04:10:12","slug":"jessica","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2015\/01\/18\/jessica\/","title":{"rendered":"INDIVIDUO CON LGMD: Jessica"},"content":{"rendered":"

01\/18\/2015:<\/p>\n

NOMBRE<\/strong>: Jessica\u00a0\u00a0\u00a0\"LGMD2A<\/a> <\/span><\/p>\n

EDAD<\/strong>: 31
\n<\/span><\/p>\n

PA\u00cdS<\/strong>: Estados Unidos
\n<\/span><\/p>\n

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


\n<\/span>A QU\u00c9 EDAD LE DIAGNOSTICARON<\/strong>:<\/span><\/span>
\n\u00a0Me diagnosticaron distrofia muscular de cinturas a los 12 a\u00f1os, pero no me subtipificaron como 2A hasta alrededor de los 25 a\u00f1os.<\/span><\/span><\/p>\n

\u00bfCU\u00c1LES FUERON SUS PRIMEROS S\u00cdNTOMAS?<\/strong>:
\nDesde que empec\u00e9 a caminar de puntillas, les dije a mis padres que se me pasar\u00eda. Con el tiempo me cost\u00f3 m\u00e1s ponerme de pie y caminar en plano, pero no mostr\u00e9 ning\u00fan otro s\u00edntoma hasta que, alrededor de los 8 a\u00f1os, empec\u00e9 a tener dificultades para subir escaleras, correr y hacer actividades en clase de gimnasia y levantarme del suelo.<\/p>\n

\u00bfTIENE OTROS FAMILIARES CON ALGMD?<\/strong>:
\nNo, soy la \u00fanica persona de mi familia que padece una forma de distrofia muscular.<\/p>\n

\u00bfCU\u00c1LES CREE QUE SON LOS MAYORES RETOS DE VIVIR CON LGMD?<\/strong>:
\nEstoy agradecida de que hay muchos aspectos de la vida con LGMD que, por la gracia de Dios, he llegado a aceptar y a los que me he adaptado con el tiempo, pero un aspecto con el que todav\u00eda lucho es el deseo de una mayor independencia y la medida en que debo depender de otros para obtener ayuda y realizar las tareas cotidianas normales. El deseo y la incapacidad de realizar tareas es como tener un picor que no te puedes rascar. A menudo requiere mucha paciencia, algo con lo que tiendo a luchar. Para complicar las cosas, hay que a\u00f1adir la culpa que a veces se siente. Existe tanto la realidad de la propia necesidad constante de ayuda de los dem\u00e1s como la realidad de que los que desempe\u00f1an el papel de cuidadores tienen necesidades, deseos, agendas y limitaciones propias que debo tener en cuenta y comprender.<\/p>\n

\u00bfCU\u00c1L ES SU MAYOR LOGRO?<\/strong>:
\nMi mayor logro es haber completado mi programa de doctorado y recibir mi Psy.D. en Psicolog\u00eda Cl\u00ednica.<\/p>\n

\u00bfC\u00d3MO TE HA INFLUIDO LA ALGMD PARA CONVERTIRTE EN LA PERSONA QUE ERES HOY?<\/strong>:
\nDios ha utilizado mi vida con la DM para bien, de muchas maneras. La utiliz\u00f3 para mostrarme mi necesidad de \u00c9l, lo que cambi\u00f3 toda mi vida. Ahora tengo una paz y una alegr\u00eda duraderas a pesar de mis circunstancias. \"Cuanto m\u00e1s d\u00e9biles nos sentimos, m\u00e1s nos apoyamos. Y cuanto m\u00e1s nos apoyamos, m\u00e1s fuertes crecemos espiritualmente, incluso mientras nuestros cuerpos se consumen.\" (J.I. Packer) Dios me ha mostrado muchas otras bendiciones a trav\u00e9s de ella. Me he vuelto creativa en la resoluci\u00f3n de problemas y he aprendido a adaptarme a los cambios. A medida que me hac\u00eda mayor, cambi\u00e9 mi enfoque de la actividad f\u00edsica a profundizar en las relaciones, explorar el arte y trabajar especialmente duro en mis estudios. He hecho amistades para toda la vida con muchas personas especiales que tienen discapacidades. Tambi\u00e9n orient\u00f3 mis estudios y mi carrera profesional hacia la esperanza de ayudar a otros a afrontar la discapacidad de forma saludable.<\/p>\n

\u00bfQU\u00c9 QUIERE QUE EL MUNDO SEPA SOBRE LA DGML?<\/strong>: La LGMD es un grupo de trastornos que afectan principalmente a los m\u00fasculos del hombro y de la cintura p\u00e9lvica. Se han identificado m\u00e1s de 20 subtipos diferentes de LGMD. La LGMD puede tener un aspecto diferente en funci\u00f3n de varios factores, como la mutaci\u00f3n o mutaciones gen\u00e9ticas espec\u00edficas, la edad de aparici\u00f3n, el ritmo de progresi\u00f3n, etc. Es posible que ni siquiera pueda saber si alguien tiene LGMD. Puede que vea a otra persona y piense que simplemente camina diferente o m\u00e1s despacio. Otra persona puede necesitar utilizar una silla de ruedas todo el tiempo. Incluso dos personas con el mismo subtipo exacto pueden presentarse de forma totalmente diferente. Intenta no hacer suposiciones, sobre todo bas\u00e1ndote en lo que ves. Y lo que es m\u00e1s importante, quiero que el mundo sepa que la LGMD no es un castigo, ni un motivo de l\u00e1stima, ni una raz\u00f3n para creer que la vida de alguien es menos valiosa o alegre. Dios puede utilizar y utiliza las experiencias dif\u00edciles, las pruebas y el sufrimiento...<\/p>\n

SI SU ALGMD PUDIERA \"CURARSE\" MA\u00d1ANA, \u00bfQU\u00c9 SER\u00cdA LO PRIMERO QUE DESEAR\u00cdA HACER?<\/strong> Me gustar\u00eda coger a mi hijo en brazos y pasear abrazado a \u00e9l. Me gustar\u00eda bailar con mi marido y compartir alg\u00fan tipo de actividad al aire libre\/deportiva\/ejercicio con \u00e9l. Me gustar\u00eda correr, saltar y brincar... \u00a1y alabar a Dios por todo ello!<\/p>\n

 <\/p>","protected":false},"excerpt":{"rendered":"

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