{"id":381,"date":"2014-05-10T23:42:58","date_gmt":"2014-05-10T23:42:58","guid":{"rendered":"http:\/\/lupusgalicia.org\/?p=381"},"modified":"2014-05-10T23:42:58","modified_gmt":"2014-05-10T23:42:58","slug":"mas-lupus-dia-mundial-con-voz","status":"publish","type":"post","link":"https:\/\/lupusgalicia.org\/?p=381","title":{"rendered":"M\u00e1s lupus: Dia mundial con voz"},"content":{"rendered":"

Hemos aparecido en radio, tv y prensa.. ma\u00f1ana m\u00e1s.<\/span><\/strong><\/h1>\n

He aqu\u00ed alguno de los medios en los que hemos aparecido pero son muchos m\u00e1s \ud83d\ude09<\/p>\n

TVE1: en el Telediario del viernes 9 a las 3 de la tarde. Ver TVE.es<\/a><\/p>\n

RTVE en Galciia. Dia 9 de mayo Ver Telexornal<\/a><\/p>\n

Antes del D\u00eda Mundial del Lupus los pacientes reivindican mayor visibilidad y reconocimiento institucional<\/span><\/h1>\n

Efe \/ Madrid\u00a006.05.2014 | 18:40<\/p>\n

\n
\n
\"Loquillo<\/p>\n
Loquillo e Imanol Arias, en un gesto solidario con los enfermos.Felupus<\/div>\n<\/div>\n
<\/div>\n
<\/div>\n<\/div>\n

Los pacientes con\u00a0lupus, un trastorno autoinmune, cr\u00f3nico y potencialmente fatal que padecen unas\u00a040.000 personas en Espa\u00f1a, denuncian que son \u00ablos discapacitados invisibles al borde de la exclusi\u00f3n\u00bb y reivindican que se reconozca como una enfermedad discapacitante.<\/p>\n

La inclusi\u00f3n del lupus en el real decreto que regula la discapacidad es una de las peticiones de las asociaciones de pacientes incluidas en el proyecto \u00ab17 visiones del lupus. An\u00e1lisis cualitativo y cuantitativo sobre la realidad del paciente con lupus en Espa\u00f1a\u00bb, hecho p\u00fablico hoy con motivo de la\u00a0celebraci\u00f3n el pr\u00f3ximo d\u00eda 10 del D\u00eda Mundial.<\/p>\n

El documento, elaborado por la\u00a0Federaci\u00f3n Espa\u00f1ola de Lupus (FELUPUS)\u00a0con el apoyo de GSK, pide tambi\u00e9n la inclusi\u00f3n de los fotoprotectores en la financiaci\u00f3n p\u00fablica del Sistema Nacional de Salud para los enfermos de lupus. Para ellos,\u00a0estas cremas son \u00abmedicamentos\u00bb, ha se\u00f1alado la presidenta de la Federaci\u00f3n, Pilar Pazos, quien ha insistido en que los pacientes deben pagar el cien por cien de los protectores solares a pesar de que deben usarlos todo el a\u00f1o, pues el sol es uno de los inductores de la enfermedad.<\/p>\n

El proyecto, que pretende ser una hoja de ruta del paciente l\u00fapico en Espa\u00f1a, recoge, por un lado, los datos de una encuesta realizada a 20 asociaciones auton\u00f3micas y regionales y, por otro, sus reivindicaciones y propuestas. A pesar de no ser una enfermedad rara, aunque s\u00ed poco frecuente, todav\u00eda\u00a0es muy desconocida entre la poblaci\u00f3n.<\/p>\n

El hecho, adem\u00e1s, de que exteriormente sea poco visible, \u00abhace que no se nos tenga en cuenta tanto como quisi\u00e9ramos\u00bb, ha subrayado Pazos, quien ha lamentado que el nombre, \u00ablobo en castellano\u00bb, tampoco ayuda, al igual que no tener ning\u00fan paciente famoso que pueda actuar de padrino para dar a conocer la enfermedad.<\/p>\n

El lupus es un trastorno que consiste en que el sistema inmunol\u00f3gico del organismo considera err\u00f3neamente como cuerpos extra\u00f1os invasores (como si fueran virus o bacterias) a c\u00e9lulas, tejidos y \u00f3rganos sanos. Como resultado,\u00a0crea anticuerpos que atacan y destruyen esos elementos sanos, lo que causa inflamaci\u00f3n, dolor y lesiones en \u00f3rganos vitales como la sangre, los ri\u00f1ones, el sistema nervioso central y el coraz\u00f3n;\u00a0puede llegar hasta la muerte\u00a0del paciente.<\/p>\n

Las secuelas graves de la enfermedad pueden producir una importante discapacidad, ha asegurado el doctor \u00c1ngel Robles, especialista en medicina interna del Hospital de la Paz de Madrid.\u00a0De cada diez pacientes, nueve son mujeres en edad f\u00e9rtil, ya que aunque se sabe que existe una predisposici\u00f3n gen\u00e9tica, los estr\u00f3genos favorecen el desarrollo de la enfermedad. Tambi\u00e9n el sol y el estr\u00e9s son desencadenantes.<\/p>\n

La presidenta de FELUPUS ha insistido en que el desconocimiento social de la enfermedad hace \u00abmucho da\u00f1o\u00bb a los pacientes. \u00abTodav\u00eda a d\u00eda de hoy dices que tienes lupus y\u00a0te preguntan si es contagioso\u00bb. Y tambi\u00e9n ha incidido en el hecho de que no est\u00e1 reconocida como enfermedad discapacitante, lo que hace que los pacientes a menudo se encuentren con dificultades para mantener las bajas m\u00e9dicas en el tiempo.<\/p>\n

\u00ab\u00bfC\u00f3mo se miden el dolor y el cansancio?\u00bb, se ha preguntado Pazos, quien ha explicado que el a\u00f1o pasado tuvo que acudir a 50 consultas de especialistas, sin contar con los an\u00e1lisis cl\u00ednicos, las pruebas y los ingresos hospitalarios que son habituales, lo que resulta incompatible con el mercado laboral. \u00abEs muy dif\u00edcil vivir con lupus\u00bb, ha dicho.<\/p>\n

Una\u00a0mayor implicaci\u00f3n institucional\u00a0para erradicar el estigma de la enfermedad, m\u00e1s divulgaci\u00f3n de informaci\u00f3n sobre el lupus y sus tratamientos, mayor conocimiento de la patolog\u00eda por parte de los m\u00e9dicos de atenci\u00f3n primaria y eliminar las barreras econ\u00f3micas son otras de las reivindicaciones del colectivo.<\/p>\n<\/div>\n","protected":false},"excerpt":{"rendered":"

Hemos aparecido en radio, tv y prensa.. ma\u00f1ana m\u00e1s. He aqu\u00ed alguno de los medios en los que hemos aparecido pero son muchos m\u00e1s \ud83d\ude09 TVE1: en el Telediario del viernes 9 a las 3 de la tarde. Ver TVE.es RTVE en Galciia. Dia 9 de mayo Ver Telexornal Antes del D\u00eda Mundial del Lupus […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"var(--ast-global-color-4)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"categories":[3,4,11,21],"tags":[22],"class_list":["post-381","post","type-post","status-publish","format-standard","hentry","category-agal","category-en-espana","category-galicia","category-jornadas-y-congresos","tag-dia-mundial-lupus"],"yoast_head":"\r\nM\u00e1s lupus: Dia mundial con voz - Asociaci\u00f3n Galega de Lupus<\/title>\r\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\r\n<link rel=\"canonical\" href=\"https:\/\/lupusgalicia.org\/?p=381\" \/>\r\n<meta property=\"og:locale\" content=\"es_ES\" \/>\r\n<meta property=\"og:type\" content=\"article\" \/>\r\n<meta property=\"og:title\" content=\"M\u00e1s lupus: Dia mundial con voz - Asociaci\u00f3n Galega de Lupus\" \/>\r\n<meta property=\"og:description\" content=\"Hemos aparecido en radio, tv y prensa.. ma\u00f1ana m\u00e1s. 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