{"id":9063,"date":"2015-06-01T11:33:44","date_gmt":"2015-06-01T16:33:44","guid":{"rendered":"http:\/\/blogs.pacasmayo.com\/felipe\/?p=9063"},"modified":"2015-06-01T16:24:00","modified_gmt":"2015-06-01T21:24:00","slug":"junio-mes-de-la-miastenia-grave","status":"publish","type":"post","link":"https:\/\/blogs.pacasmayo.com\/felipe\/2015\/06\/01\/junio-mes-de-la-miastenia-grave\/","title":{"rendered":"Junio, mes de la Miastenia Grave"},"content":{"rendered":"<p>La Miastenia Grave (myasthenia gravis, read the English version of this article <a href=\"http:\/\/blogs.pacasmayo.com\/felipe\/2015\/06\/01\/june-myasthenia-gravis-awareness-month\/\">here<\/a>) es una enfermedad incurable del sistema inmunol\u00f3gico que produce debilidad severa por p\u00e9rdida del control muscular en diferentes \u00e1reas del cuerpo. A veces ha sido llamada &#8220;s\u00edndrome de mu\u00f1eca de trapo&#8221; porque las personas que lo sufren pierden el control de los llamados m\u00fasculos voluntarios, que incluye los ojos, la garganta, el pecho, las extremidades, entre otros. Tambi\u00e9n se llama a los pacientes &#8220;copos de nieve&#8221; porque no hay dos pacientes iguales. Hasta que se descubri\u00f3 que se puede tratar los s\u00edntomas de la enfermedad con corticoesteroides, dos tercios de los pacientes continuaba degenerando, la mitad de los cuales, o sea un tercio del total, mor\u00eda debido a la enfermedad.<br \/>\nAunque la ciencia ha mejorado su entendimiento de la enfermedad, es una enfermedad rara y pr\u00e1cticamente desconocida, no s\u00f3lo entre la poblaci\u00f3n, sino a\u00fan entre los profesionales de la salud. La queja n\u00famero uno de la mayor parte de los pacientes de MG, es el tiempo que pas\u00f3, la cantidad de citas, la cantidad de doctores, y la cantidad de falsos diagn\u00f3sticos que tuvieron desde el momento en que se presentaron los s\u00edntomas hasta que finalmente recibieron el diagn\u00f3stico correcto, en la mayor parte de los casos pasaron varios a\u00f1os.<\/p>\n<p>Tal vez no te importe, porque no conoces a nadie con Miastenia Grave&#8230; en alg\u00fan momento te contar\u00e9 mi historia completa, incluyendo c\u00f3mo la mano de Dios se ha manifestado grandemente de principio a fin; por ahora, d\u00e9jame decirte que yo he tenido esta enfermedad por d\u00e9cadas, he sido visto por decenas de doctores, desde doctores de pueblo hasta doctores de uno de los mejores hospitales del mundo, y he sido incorrectamente diagnosticado y tratado por mielitis, fatiga, apnea central, neumon\u00eda (varias veces), isquemia (falta de irrigaci\u00f3n a partes del m\u00fasculo del coraz\u00f3n, grav\u00edsimo), migra\u00f1a, terapia f\u00edsica de los hombros, todo tipo de alergias, visitas a urgencias y emergencias con sospechas de c\u00e1ncer al pulm\u00f3n, aneurisma\/derrame cerebral&#8230; sin que ninguno de mis doctores jam\u00e1s sospechara la verdadera ra\u00edz de todos estos s\u00edntomas.<br \/>\nInclusive, despu\u00e9s que hice mi propia investigaci\u00f3n y me autodiagnostiqu\u00e9 con MG, mi doctora no lo crey\u00f3&#8230; tuve que escribir todos los s\u00edntomas de toda mi vida para que ella me env\u00ede a que me hagan un estudio en la cl\u00ednica de Miastenia Grave de la Universidad Duke, donde finalmente me confirmaron el diagn\u00f3stico y empezaron el tratamiento que me ha devuelto la vida.<br \/>\nEn su misericordia, el Se\u00f1or, Dios Todopoderoso, me ha sostenido durante los momentos m\u00e1s dif\u00edciles y me ha fortalecido para que mi fe no falte. Hoy he recuperado casi el 90% a 95% de mi fuerza y vivo una vida pr\u00e1cticamente normal, con una excepci\u00f3n&#8230; el tratamiento actual consiste en destruir mi sistema inmunol\u00f3gico&#8230; ya no tengo defensas y cualquier simple virus o bacteria significar\u00eda un viaje a emergencia&#8230; besos y abrazos, y especialmente apretones de manos est\u00e1n prohibidos, pero puedo volver a jugar voley, subir escaleras y mantener un nivel de actividad saludable.<\/p>\n<p>Miastenia Grave&#8230; no lo olvides, es una enfermedad incurable, pero con el tratamiento adecuado uno puede regresar a una vida relativamente normal&#8230; pero si la gente no sabe de la enfermedad, y lo que es peor, los profesionales de la salud contin\u00faan ignorando los hechos sobre esta enfermedad grave&#8230; muchos pacientes continuar\u00e1n sufriendo y hasta muriendo en vano.<br \/>\nPor eso, el mes de Junio ha sido declarado el mes de tomar conciencia sobre la Miastenia Grave&#8230; ay\u00fadame a pasar la voz!<\/p>\n","protected":false},"excerpt":{"rendered":"<p>La Miastenia Grave (myasthenia gravis, read the English version of this article here) es una enfermedad incurable del [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":9064,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"fifu_image_url":"","fifu_image_alt":"","footnotes":""},"categories":[26],"tags":[30,27,29,28],"class_list":["post-9063","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-miastenia","tag-miastenia-2","tag-miastenia-grave","tag-myasthenia","tag-myasthenia-gravis"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - 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