{"id":4444,"date":"2019-05-31T06:12:36","date_gmt":"2019-05-31T06:12:36","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2019\/05\/31\/nos-unimos-al-dia-de-la-linfangioleiomiomatosis\/"},"modified":"2019-05-31T06:12:36","modified_gmt":"2019-05-31T06:12:36","slug":"nos-unimos-al-dia-de-la-linfangioleiomiomatosis","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2019\/05\/31\/nos-unimos-al-dia-de-la-linfangioleiomiomatosis\/","title":{"rendered":"Nos unimos al D\u00eda de la Linfangioleiomiomatosis"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p>El pr\u00f3ximo 1 de junio se celebra el D\u00eda de las Linfangioleiomiomatosis con el objetivo de conciencia a sociedad sobre esta enfermedad poco frecuente que tiene una prevalencia de 1 mujer por cada 100.000. Por otro lado, en esta jornada, FEDER nos hemos querido unir con todas las personas que tienen Linfangioleiomiomatosis&nbsp;&nbsp;y con sus familiares para conseguir que cada vez m\u00e1s personas conozcan esta patolog\u00eda. Adem\u00e1s,&nbsp;queremos recordar la importancia de la creaci\u00f3n de una Unidad de Referencia para las&nbsp;linfangioleiomiomatosis.<\/p>\n<p><span style=\"text-decoration: underline\"><span style=\"font-size: 12pt\">Campa\u00f1a de sensibilizaci\u00f3n #ConLdeLam<\/span><\/span><\/p>\n<p>Aplaudimos el esfuerzo incansable que realizan entidades del movimiento asociativo vinculado a las linfangioleiomiomatosis&nbsp;como, la Asociaci\u00f3n Espa\u00f1ola de Linfangioleiomiomatosis&nbsp;(AELAM) que tiene como objetivos, dar a conocer esta enfermedad poco frecuente entre organismos p\u00fablicos, sociedad en general y personal sanitario. Adem\u00e1s, promocionan el conseguir un registro nacional para saber exactamente el n\u00famero total de mujeres que tienen esta enfermedad. Adem\u00e1s, en esta jornada, la AELAM realiza una campa\u00f1a de sensibilizaci\u00f3n en redes sociales para visibilizar a las personas que conviven con esta enfermedad, por ello, animan a todo el mundo a pintarse las manos, realizando una L y subir una foto bajo las etiquetas #MujeresLAM #ConLdeLam #Ayudanosarespirar<\/p>\n<p>Adem\u00e1s, reconocemos el trabajo de la Asociaci\u00f3n Grupo de Enfermedades Raras de Navarra (GERNA) que tienen como objetivo principal formar un grupo de personas y familias donde todas ellas se sientan representadas, creando un espacio donde poder compartir experiencias.<\/p>\n<p><span style=\"text-decoration: underline\"><span style=\"font-size: 12pt\">\u00bfQu\u00e9 es la Linfangioleiomiomatosis?<\/span><\/span><\/p>\n<p>Es una enfermedad pulmonar poco frecuente y de causa desconocida, que afecta a mujeres, por lo general, en edad f\u00e9rtil y que se caracteriza por un crecimiento an\u00f3malo de c\u00e9lulas musculares lisas at\u00edpicas (c\u00e9lulas LAM) a nivel pulmonar, formando quistes o bullas, afectando las v\u00edas a\u00e9reas, vasos linf\u00e1ticos y sangu\u00edneos, de modo que destruyen progresivamente el tejido pulmonar sano y \u00e9ste va perdiendo su funci\u00f3n.<\/p>\n<p>La Linfangioleiomiomatosis puede aparecer de forma espor\u00e1dica o asociada a la presencia de otra enfermedad rara, la Esclerosis Tuberosa.<\/p>\n<p>Puede presentar complicaciones como neumot\u00f3rax, quilot\u00f3rax (Presencia de l\u00edquido linf\u00e1tico en el espacio pleural) y hemoptisis (Expectoraci\u00f3n de sangre proveniente de los pulmones) que suele evolucionar en insuficiencia respiratoria.<\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n 30\/05\/2019<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/12426-nos-unimos-al-d%C3%ADa-de-la-linfangioleiomiomatosis\" target=\"_blank\" rel=\"noopener noreferrer\">Nos unimos al D\u00eda de la Linfangioleiomiomatosis<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: El pr\u00f3ximo 1 de junio se celebra el D\u00eda de las Linfangioleiomiomatosis con el objetivo de conciencia a sociedad sobre esta enfermedad poco frecuente que tiene una prevalencia de 1 mujer por cada 100.000. Por otro lado, en esta jornada, FEDER nos hemos [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[36],"class_list":["post-4444","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.7 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Nos unimos al D\u00eda de la Linfangioleiomiomatosis - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge<\/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:\/\/sindromecharge.es\/index.php\/2019\/05\/31\/nos-unimos-al-dia-de-la-linfangioleiomiomatosis\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Nos unimos al D\u00eda de la Linfangioleiomiomatosis - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\" \/>\n<meta property=\"og:description\" content=\"Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: El pr\u00f3ximo 1 de junio se celebra el D\u00eda de las Linfangioleiomiomatosis con el objetivo de conciencia a sociedad sobre esta enfermedad poco frecuente que tiene una prevalencia de 1 mujer por cada 100.000. 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