{"id":2431,"date":"2020-05-15T00:19:46","date_gmt":"2020-05-15T00:19:46","guid":{"rendered":"http:\/\/alianzapacientes.org\/?p=2431"},"modified":"2020-05-15T00:19:46","modified_gmt":"2020-05-15T00:19:46","slug":"mucopolisacaridosis-persigue-las-senales","status":"publish","type":"post","link":"https:\/\/www.marianakirby.com\/alapa\/2020\/05\/15\/mucopolisacaridosis-persigue-las-senales\/","title":{"rendered":"Mucopolisacaridosis, \u201cPersigue las se\u00f1ales\u201d"},"content":{"rendered":"<p><span style=\"color: #000000;\">Hoy es el <strong>D\u00eda Mundial de la Mucopolisacaridosis (MPS)<\/strong>, una enfermedad poco frecuente que requiere su difusi\u00f3n y conocimiento para que sea detectada y diagnosticada lo m\u00e1s temprano posible.<\/span><\/p>\n<p><img fetchpriority=\"high\" decoding=\"async\" class=\"wp-image-2435 alignleft\" src=\"http:\/\/alianzapacientes.org\/wp-content\/uploads\/2020\/05\/3-300x244.png\" alt=\"\" width=\"400\" height=\"325\" srcset=\"https:\/\/www.marianakirby.com\/alapa\/wp-content\/uploads\/2020\/05\/3-300x244.png 300w, https:\/\/www.marianakirby.com\/alapa\/wp-content\/uploads\/2020\/05\/3-768x624.png 768w, https:\/\/www.marianakirby.com\/alapa\/wp-content\/uploads\/2020\/05\/3.png 799w\" sizes=\"(max-width: 400px) 100vw, 400px\" \/><span style=\"color: #000000;\">En nuestro pa\u00eds contamos con la <\/span><strong style=\"color: #000000;\">Asociaci\u00f3n Mucopolisacaridosis Argentina (AMA)<\/strong><span style=\"color: #000000;\"> quienes lanzaron la campa\u00f1a \u201c<\/span><strong style=\"color: #000000;\">Persigue las se\u00f1ales<\/strong><span style=\"color: #000000;\">\u201d y desde donde han compartido informaci\u00f3n importante sobre las MPS.<\/span><\/p>\n<p><span style=\"color: #000000;\">Las Mucopolisacaridosis son un grupo de enfermedades raras, gen\u00e9ticas, causadas por la ausencia o deficiencia de enzimas especificas en el organismo que imposibilita el proceso de reciclaje y genera un almacenamiento de residuos en las c\u00e9lulas del cuerpo.<\/span><\/p>\n<p><span style=\"color: #000000;\">Esto genera que las c\u00e9lulas no funcionen correctamente y pueden causar da\u00f1o progresivo en distintos \u00f3rganos del cuerpo, haciendo que los s\u00edntomas sean amplios y var\u00eden de paciente a paciente.<\/span><\/p>\n<p><span style=\"color: #000000;\">Ver\u00f3nica Alonso, presidenta de la entidad, remarc\u00f3: \u201c<em>en el marco de la campa\u00f1a por la concientizaci\u00f3n de las MPS buscamos que al crear conciencia sobre la posibilidad de las factibles combinaciones de s\u00edntomas, se aumente la posibilidad de ayudar a pacientes, m\u00e9dicos y familiares a buscar esas se\u00f1ales y as\u00ed poder arribar a un diagn\u00f3stico precoz<\/em>\u201d.<\/span><\/p>\n<p><img decoding=\"async\" class=\"wp-image-2433 alignleft\" src=\"http:\/\/alianzapacientes.org\/wp-content\/uploads\/2020\/05\/foto2-300x300.jpg\" alt=\"\" width=\"400\" height=\"400\" srcset=\"https:\/\/www.marianakirby.com\/alapa\/wp-content\/uploads\/2020\/05\/foto2-300x300.jpg 300w, https:\/\/www.marianakirby.com\/alapa\/wp-content\/uploads\/2020\/05\/foto2-150x150.jpg 150w, https:\/\/www.marianakirby.com\/alapa\/wp-content\/uploads\/2020\/05\/foto2-768x768.jpg 768w, https:\/\/www.marianakirby.com\/alapa\/wp-content\/uploads\/2020\/05\/foto2.jpg 960w\" sizes=\"(max-width: 400px) 100vw, 400px\" \/><\/p>\n<p><span style=\"color: #000000;\">Respecto al diagn\u00f3stico, desde AMA informaron que el mismo es dif\u00edcil y, en la mayor\u00eda de los casos, tard\u00edo. Hasta que la enfermedad es diagnosticada, es com\u00fan que el paciente visite muchos m\u00e9dicos y trate las consecuencias y no la causa del problema.<\/span><\/p>\n<p><span style=\"color: #000000;\">Su tratamiento requiere la participaci\u00f3n de genetistas, cardi\u00f3logos, neur\u00f3logos, fisioterapeutas, odont\u00f3logos, entre otros.<\/span><\/p>\n<p>&nbsp;<\/p>\n<h4><span style=\"color: #800080;\"><strong>PREVALENCIA<\/strong><\/span><\/h4>\n<p><span style=\"color: #000000;\">Se estima que las MPS se presentan en 1 de cada 25 mil habitantes, por lo que se encuentra entre las enfermedades poco frecuentes.<\/span><\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<h4><span style=\"color: #800080;\"><strong>MUCOPOLISACARIDOSIS Y COVID19<\/strong><\/span><\/h4>\n<p><span style=\"color: #000000;\">En relaci\u00f3n a la situaci\u00f3n actual respecto a la pandemia, Alonso detall\u00f3: \u201c<em>en este momento de aislamiento social y obligatorio por el COVID19, las familias nos encontramos en estado de alerta frente a la progresi\u00f3n de s\u00edntomas, principalmente, en la parte respiratoria<\/em>\u201d.<\/span><\/p>\n<p><span style=\"color: #000000;\">Desde AMA se recomend\u00f3 a los pacientes que requieren infusiones enzim\u00e1ticas semanales (TRE) que ser\u00eda conveniente realizarlas en domicilio con personal profesional entrenado y evitar asistir a los hospitales excepto que sea necesario.<\/span><\/p>\n<p>&nbsp;<\/p>\n<p><iframe title=\"Ver\u00f3nica Alonso - Mucopolisacaridosis\" width=\"800\" height=\"450\" src=\"https:\/\/www.youtube.com\/embed\/29W28E4s7jQ?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"color: #800080;\"><strong>ASOCIACI\u00d3N MUCOPOLISACARIDOSIS ARGENTINA<\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\">Tel\u00e9fono: 011 4219-5934<\/span><\/p>\n<p><span style=\"color: #000000;\">Correo electr\u00f3nico:<\/span><strong><a href=\"mailto:%20ampsarg@gmail.com%0d\"> ampsarg@gmail.com<\/a><\/strong><\/p>\n<p><span style=\"color: #000000;\">Facebook:<\/span> <a class=\"_64-f\" href=\"https:\/\/www.facebook.com\/MpsArgentina\/\" target=\"_blank\" rel=\"noopener noreferrer\">A.M.A Asociacion de Mucopolisacaridosis Argentina<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Hoy es el D\u00eda Mundial de la Mucopolisacaridosis (MPS), una enfermedad poco frecuente que requiere su difusi\u00f3n y conocimiento para que sea detectada y diagnosticada lo m\u00e1s temprano posible. En nuestro pa\u00eds contamos con la Asociaci\u00f3n Mucopolisacaridosis Argentina (AMA) quienes lanzaron la campa\u00f1a \u201cPersigue las se\u00f1ales\u201d y desde donde han compartido informaci\u00f3n importante sobre las [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":2432,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_joinchat":[],"footnotes":""},"categories":[7],"tags":[],"class_list":["post-2431","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-enfermedades-poco-frecuentes"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Mucopolisacaridosis, \u201cPersigue las se\u00f1ales\u201d - Alianza Argentina de Pacientes - ALAPA<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.marianakirby.com\/alapa\/2020\/05\/15\/mucopolisacaridosis-persigue-las-senales\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Mucopolisacaridosis, \u201cPersigue las se\u00f1ales\u201d - Alianza Argentina de Pacientes - ALAPA\" \/>\n<meta property=\"og:description\" content=\"Hoy es el D\u00eda Mundial de la Mucopolisacaridosis (MPS), una enfermedad poco frecuente que requiere su difusi\u00f3n y conocimiento para que sea detectada y diagnosticada lo m\u00e1s temprano posible. 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