{"id":3370,"date":"2019-12-11T11:17:45","date_gmt":"2019-12-11T10:17:45","guid":{"rendered":"https:\/\/agora.xtec.cat\/iesalfacs\/?p=3370"},"modified":"2019-12-15T15:42:52","modified_gmt":"2019-12-15T14:42:52","slug":"marato-tv3-malalties-minoritaries","status":"publish","type":"post","link":"https:\/\/agora.xtec.cat\/iesalfacs\/general\/marato-tv3-malalties-minoritaries\/","title":{"rendered":"MARAT\u00d3 TV3 MALALTIES MINORIT\u00c0RIES"},"content":{"rendered":"<div class=\"M-separadorSeccio T-maratoTema\">\n<h1><\/h1>\n<h5 class=\"titol\">Aquest dimarts 10 de desembre hem pogut assistir a les xarrades de la Marat\u00f3 impartides per una experta en el tema. Hem dirigit les xarrades a l&#8217;alumnat de batxillerat, cicles i PFI; d&#8217;altra banda,\u00a0 els alumnes de 3r d&#8217;ESO i del SIEI dijous podran vendre productes (esmorzars solidaris i detalls nadalencs) per 1 euro per tal de poder recaptar diners per a la Marat\u00f3. els companys d&#8217;Aq\u00fcicultura, com tots els anys, tamb\u00e9 col\u00b7laboraran a partir d&#8217;una rifa de peixos.<\/h5>\n<\/div>\n<div class=\"F-TwigTextLliure gapAfter T-maratoTema\">\n<div><\/div>\n<div class=\"F-text\"><strong>Qu\u00e8 son?<\/strong><\/div>\n<div><\/div>\n<div class=\"F-text\">\n<p>S\u00f3n malalties molt poc freq\u00fcents que afecten un m\u00e0xim de 5 persones per cada 10.000 habitants. Inclouen un conjunt de malalties molt diferents entre si, per\u00f2 tenen en com\u00fa que acostumen a ser greus, cr\u00f2niques, progressives i discapacitants.<\/p>\n<h2 class=\"titol-gran\"><strong style=\"font-size: 16px;\">Quantes persones hi ha afectades?<\/strong><\/h2>\n<\/div>\n<div class=\"F-text\">Que afectin cadascuna molt poca gent no vol dir que no estiguin molt esteses. Els experts calculen que el conjunt de malalties minorit\u00e0ries poden afectar fins al <strong>7% de la poblaci\u00f3 general<\/strong>. Per tant, s&#8217;estima que actualment hi ha a l&#8217;entorn de\u00a0<strong>400.000 persones\u00a0<\/strong>que tenen alguna d&#8217;aquests patologies a Catalunya, 3 milions a Espanya i m\u00e9s de 30 milions a tot Europa.<br \/>\n<strong>Quines malalties hi ha?<\/strong>Actualment, n&#8217;hi ha descrites unes <strong>7.000<\/strong>, que poden afectar de formes molt diferents la salut de les persones malaltes, com ara la mobilitat, el sistema nervi\u00f3s o l&#8217;immunol\u00f2gic, el metabolisme o l&#8217;equilibri hormonal, entre altres.Per exemple:\u00a0<strong>la malaltia de Morquio<\/strong>\u00a0\u00e9s una afectaci\u00f3 gen\u00e8tica que provoca una defici\u00e8ncia en el creixement i malformacions al t\u00f2rax i les cames. Els s\u00edmptomes normalment comencen en infants al voltant dels 2 anys, tot i que la malaltia es t\u00e9 des del naixement. \u00c9s una patologia greu i progressiva, que dificulta la mobilitat de les persones afectades\u00a0 i que, de moment, no t\u00e9 tractament. Per\u00f2 estan en marxa diversos assajos cl\u00ednics molt esperan\u00e7adors.Un altre exemple: el\u00a0<strong>nevus cong\u00e8nit melanoc\u00edtic gegant<\/strong>\u00a0\u00e9s una malaltia de la pell, que provoca grans taques des del naixement i que predisposa la persona a tenir c\u00e0ncer o afectacions neuronals. No t\u00e9 cura.I encara una altra: la\u00a0<strong>fibrosi qu\u00edstica<\/strong>. Aquesta malaltia fa que s&#8217;acumuli mucositat en molts \u00f2rgans del cos, com el fetge i els pulmons, i provoca infeccions i dificultats\u00a0 respirat\u00f2ries. \u00c9s una malaltia greu i, de moment, incurable, per\u00f2 els aven\u00e7os multidisciplinaris dels \u00faltims anys han fet que la qualitat de vida dels pacients hagi millorat molt.<\/p>\n<\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"<p>Aquest dimarts 10 de desembre hem pogut assistir a les xarrades de la Marat\u00f3 impartides per una experta en el tema. Hem dirigit les xarrades a l&#8217;alumnat de batxillerat, cicles i PFI; d&#8217;altra banda,\u00a0 els alumnes de 3r d&#8217;ESO i del SIEI dijous podran vendre productes (esmorzars solidaris i detalls nadalencs) per 1 euro per [&hellip;]<\/p>\n","protected":false},"author":7,"featured_media":3371,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_bbp_topic_count":0,"_bbp_reply_count":0,"_bbp_total_topic_count":0,"_bbp_total_reply_count":0,"_bbp_voice_count":0,"_bbp_anonymous_reply_count":0,"_bbp_topic_count_hidden":0,"_bbp_reply_count_hidden":0,"_bbp_forum_subforum_count":0,"site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"","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":"","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":[1,29],"tags":[],"class_list":["post-3370","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-general","category-portada"],"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/agora.xtec.cat\/iesalfacs\/wp-json\/wp\/v2\/posts\/3370","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/agora.xtec.cat\/iesalfacs\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/agora.xtec.cat\/iesalfacs\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/agora.xtec.cat\/iesalfacs\/wp-json\/wp\/v2\/users\/7"}],"replies":[{"embeddable":true,"href":"https:\/\/agora.xtec.cat\/iesalfacs\/wp-json\/wp\/v2\/comments?post=3370"}],"version-history":[{"count":3,"href":"https:\/\/agora.xtec.cat\/iesalfacs\/wp-json\/wp\/v2\/posts\/3370\/revisions"}],"predecessor-version":[{"id":3383,"href":"https:\/\/agora.xtec.cat\/iesalfacs\/wp-json\/wp\/v2\/posts\/3370\/revisions\/3383"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/agora.xtec.cat\/iesalfacs\/wp-json\/wp\/v2\/media\/3371"}],"wp:attachment":[{"href":"https:\/\/agora.xtec.cat\/iesalfacs\/wp-json\/wp\/v2\/media?parent=3370"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/agora.xtec.cat\/iesalfacs\/wp-json\/wp\/v2\/categories?post=3370"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/agora.xtec.cat\/iesalfacs\/wp-json\/wp\/v2\/tags?post=3370"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}