
{"id":204700,"date":"2017-09-04T18:16:32","date_gmt":"2017-09-04T16:16:32","guid":{"rendered":"https:\/\/www.fqeuskadi.org\/?p=204700\/"},"modified":"2017-09-04T18:16:32","modified_gmt":"2017-09-04T16:16:32","slug":"aldarrikapenak-2017-fkaren-nazioarteko-eguna","status":"publish","type":"post","link":"https:\/\/www.fqeuskadi.org\/eu\/aldarrikapenak-2017-fkaren-nazioarteko-eguna\/","title":{"rendered":"Aldarrikapenak 2017 FKaren Nazioarteko eguna"},"content":{"rendered":"<p>[et_pb_section bb_built=&#8221;1&#8243;][et_pb_row][et_pb_column type=&#8221;4_4&#8243;][et_pb_text _builder_version=&#8221;3.0.69&#8243; background_layout=&#8221;light&#8221; text_orientation=&#8221;left&#8221; border_style=&#8221;solid&#8221;]<\/p>\n<h2><strong>Irailak 8 Fibrosi Kistikoaren nazioarteko eguna<\/strong><\/h2>\n<p><span style=\"font-size: 13pt; font-family: lato-regular;\">Fibrosi Kistikoaren (FK) nazioarteko egunaren harira Euskadiko Fibrosi Kistikoaren elkarteak programa zabala prestatu du, kalera irtengo dira ekimen desberdinen bitartez gaixo eta hauen familien aldarrikapenak ezagutzera emateko.<\/span><\/p>\n<p><span style=\"font-family: lato-regular; font-size: 13pt;\"><br \/>\n\u201cMusu Gaziei Arnasa ematen\u201d lelopean; Orokorrean gizartearen, eta zehazki FK dutenen eta hauen senideen, parte hartze aktiboa bilatzen dute desberdintasunak errespetatzea, parekotasun aukerak ematea eta inklusiboa den gizarte bat lortzeko.<br \/>\n<\/span><\/p>\n<h2 style=\"text-align: center;\"><strong>2017 ALDARRIKAPENAK<\/strong><\/h2>\n<p>&nbsp;<\/p>\n<h3><span style=\"text-decoration: underline;\"><strong>ORKAMBI botikaren onarpena<\/strong><\/span><\/h3>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-full wp-image-33820\" src=\"https:\/\/www.fqeuskadi.org\/wp-content\/uploads\/2017\/07\/orkambi-fq-mutaci\u00f3n-f508.png\" alt=\"orkambi fq\" width=\"281\" height=\"179\"><\/p>\n<p><span style=\"font-family: lato-regular; font-size: 13pt;\"><a href=\"https:\/\/www.redaccionmedica.com\/secciones\/industria\/europa-autoriza-orkambi-como-primer-farmaco-para-la-causa-subyacente-de-fibrosis-quistica-90651\" target=\"_blank\" rel=\"noopener\"><strong>Orkambia<\/strong><\/a>&nbsp; CFTR proteinak duen akatsa zuzentzeko botika da. Proteina honek Kloroa eta gatzak garraiatzen ditu zelula artean, garraio hau oker egiten da FK duten pertsonetan. <\/span><\/p>\n<p><span style=\"font-family: lato-regular; font-size: 13pt;\">Hau dela eta kloro maila altuak eta zapore gazia izaten dute. Botika hau, 12 urtetik gorako FK dutenen artean <strong>DF508 mutazioa dutenentzat zuzenduta dago.<\/strong><\/span><\/p>\n<p><span style=\"font-family: lato-regular; font-size: 13pt;\"><br \/>\nBadirudi botikaren emaitzak biriken gaitasuna % 6 eta 8 artean hobetzen dutela, baina emaitza oso desberdinak egon dira, baita espero zirenak baina askoz hobeak. <\/span><\/p>\n<p><span style=\"font-family: lato-regular; font-size: 13pt;\">Orokorrean aurreikuspenak oso onak dira eta espero da botika honek FK duten pertsona askoren bizitza aldatuko duela.<\/span><\/p>\n<p>Gaur egun Espainiako Botiken Agentziak ez du Orkambia onartu, baina jakina da pertsona batzuk botika hartzen hasi direla erabilera errukiorraren bitartez.<\/p>\n<p>Lehenengo aldiz Estatu Batuetan onartu zen 2015eko uztailean. Europar batasunak aldiz 2016an onartu zuen eta egun Alemania, Erresuma Batuak eta Italiak ere onartu dute.<\/p>\n<h3><span style=\"text-decoration: underline;\"><strong>Arnas Fisioterapia denontzat <\/strong><\/span><\/h3>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-full wp-image-204384\" src=\"https:\/\/www.fqeuskadi.org\/wp-content\/uploads\/2013\/04\/fisio-eskola-fq.jpg\" alt=\"fisio eskola para fibrosis quistica\" width=\"400\" height=\"300\"><\/p>\n<p><span style=\"font-family: lato-regular; font-size: 13pt;\"><a href=\"https:\/\/www.fqeuskadi.org\/fisioterapia-respiratoria\/\"><strong>Arnas Fisioterapia denontzat<\/strong> <\/a>es <strong>Arnas Fisioterapia FK-ren tratamenduaren hiru oinarrizko zutabeetako bat da<\/strong><\/span><\/p>\n<p><span style=\"font-family: lato-regular; font-size: 13pt;\">Gaur egun FK dutenen <strong>bizi kalitatea mantentzeko bide nagusia da.<\/strong> Medikuek egunean bi aldiz egin dezaten agintzen diete gaixoei, baina Osakidetzak eskaintzen duen zerbitzuak asko du hobetzeko eta ez dio oinarrizko behar honi erantzuna ematen.<\/span><\/p>\n<p><span style=\"font-family: lato-regular; font-size: 13pt;\">Hau dela eta Araba, Bizkaia eta Gipuzkoako FK-ren elkarteak behar honi erantzuna ematera behartuak ikusi dira, eta euren Arnas Fisioterapia zerbitzu propioak sortu eta honek suposatzen duen gastuari aurre egin behar diote.<\/span><\/p>\n<h3><span style=\"text-decoration: underline;\"><strong>Ikerketaren sustapena<\/strong><\/span><\/h3>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-full wp-image-204366\" src=\"https:\/\/www.fqeuskadi.org\/wp-content\/uploads\/2016\/09\/laboratorio-vertex.jpg\" alt=\"laboratorio vertex\" width=\"300\" height=\"200\"><\/p>\n<p><span style=\"font-family: lato-regular; font-size: 13pt;\"><strong>Ikerketa FK dutenen etorkizuna da<\/strong>, azkeneko urteetan aurrerakuntza handiak eman dira eta hauek FK-ren bai bizi itxaropena zein bizi kalitatea hobetu dituzten arren, oraindik erantzun gabeko galdera asko daude FK-ren inguruan.<\/span><\/p>\n<p><span style=\"font-family: lato-regular; font-size: 13pt;\">Espero dugu Orkambiak pertsona askoren bizitza aldatzea, baina oraindik beste asko geratzen dira behar duten esperantza eta arnasa emango dien botikaren zain..<\/span><\/p>\n<h3><span style=\"text-decoration: underline;\"><strong>FK duten pertsonak atenditzen diren instalazioak egokitu eta FK-aren Unitatea sortu Gurutzetako Ospitalean.<\/strong><\/span><\/h3>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-full wp-image-204382\" src=\"https:\/\/www.fqeuskadi.org\/wp-content\/uploads\/2013\/04\/hospital-de-Cruces-bizkaia.jpg\" alt=\"reivindicaciones hospital de Cruces bizkaia\" width=\"400\" height=\"300\"><\/p>\n<p><span style=\"font-family: lato-regular; font-size: 13pt;\"><strong>FK-k duen zailtasunetako bat infekzio gurutzatuak dira,<\/strong> hau dela eta ezinbestekoa da gaixoak artatuko diren espazioen egokitzapena eta kontsulta egunak moldatzea bakoitzak duen bakterioaren arabera.<\/span><\/p>\n<p>Duela bi urte helduen zonaldean hobekuntzak lortu ziren arren, oraindik pediatriako arloa jendez gainezka egoten da eta beste espezialitateko gaixoekin nahastuta.<\/p>\n<p><span style=\"font-family: lato-regular; font-size: 13pt;\">Giza baliabide gehiago eta instalazio egokiak behar dira FK duten pertsonen arreta hobetzeko, EAE-an paziente eta ospitale arteko ratioa estatuko beste toki askotan baina altuagoa da.<\/span><\/p>\n<h3><span style=\"text-decoration: underline;\"><strong>&nbsp;<\/strong><strong>Gure laguntza beharrak onartu daitezela existitzen diren baliabideak jaso ahal izateko.<\/strong><\/span><\/h3>\n<p>&nbsp;<\/p>\n<p>Gaixotasunak modu zuzenean ondorio fisikoak bakarrik dituen arren, beste gaixotasun kroniko askorekin gertatzen den moduan, FK-k pertsona baten bizitza osatzen duten alderdi guztietan du eragina.<\/p>\n<p>Bai FK duen pertsonan eta baita honen senideetan ere.<\/p>\n<p><span style=\"font-family: lato-regular; font-size: 13pt;\">FK gaixotasun arraroa izanik, ez ditu ezgaitasuna eta dependentzia eragiten duten ohiko gaixotasunen parametroak betetzen. Honek desabantaila egoera argi batean jartzen ditu FK dutenak izan ere ezin izango dute behar dituzten baliabide asko eskuratu..<\/span><\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row][et_pb_column type=&#8221;4_4&#8243;][et_pb_blurb url_new_window=&#8221;off&#8221; use_icon=&#8221;off&#8221; font_icon=&#8221;%%188%%&#8221; icon_color=&#8221;#0eaaed&#8221; use_circle=&#8221;off&#8221; circle_color=&#8221;#000000&#8243; use_circle_border=&#8221;off&#8221; circle_border_color=&#8221;#000000&#8243; icon_placement=&#8221;top&#8221; animation=&#8221;off&#8221; background_layout=&#8221;light&#8221; use_icon_font_size=&#8221;off&#8221; header_font_size_last_edited=&#8221;on|desktop&#8221; header_text_color=&#8221;#280400&#8243; body_font_size_last_edited=&#8221;on|desktop&#8221; use_border_color=&#8221;on&#8221; border_color=&#8221;#280400&#8243; border_style=&#8221;solid&#8221; header_font=&#8221;|on|||&#8221; body_font=&#8221;|on|||&#8221; body_font_size=&#8221;30&#8243; body_font_size_phone=&#8221;20&#8243; header_font_size=&#8221;30&#8243; header_font_size_phone=&#8221;19&#8243; body_font_size_tablet=&#8221;24&#8243; header_font_size_tablet=&#8221;22&#8243; saved_tabs=&#8221;all&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; background_size=&#8221;initial&#8221; _builder_version=&#8221;3.0.69&#8243; background_color=&#8221;#4dd0e1&#8243; text_orientation=&#8221;center&#8221; border_width=&#8221;0px&#8221; custom_padding=&#8221;10px||10px|&#8221; custom_padding_last_edited=&#8221;on|phone&#8221; custom_padding_phone=&#8221;5px|10px|5px|10px&#8221;]<\/p>\n<p>EKIMEN PROGRAMA<\/p>\n<p>[\/et_pb_blurb][et_pb_text _builder_version=&#8221;3.0.69&#8243; background_layout=&#8221;light&#8221; text_orientation=&#8221;left&#8221; border_style=&#8221;solid&#8221; disabled=&#8221;off&#8221; disabled_on=&#8221;on|on|&#8221;]<\/p>\n<table style=\"width: 900px; height: 320px;\">\n<tbody>\n<tr>\n<td style=\"width: 843.849px; text-align: center;\" colspan=\"5\"><strong>&nbsp;EKIMEN PROGRAMA<\/strong><\/td>\n<\/tr>\n<tr style=\"height: 46px;\">\n<td style=\"width: 100px; text-align: center; height: 46px;\"><strong>&nbsp; DIA\/EGUNA<\/strong><\/td>\n<td style=\"width: 68px; text-align: center; height: 46px;\"><strong>HORA\/ ORDUA<\/strong><\/td>\n<td style=\"width: 135px; text-align: center; height: 46px;\"><strong>&nbsp; LUGAR\/LEKUA<\/strong><\/td>\n<td style=\"width: 249px; text-align: center; height: 46px;\"><strong>&nbsp; &nbsp; ACTIVIDAD\/EKIMENA<\/strong><\/td>\n<td style=\"width: 291.849px; text-align: center; height: 46px;\"><strong>&nbsp;ORGANIZA\/ANTOLATZAILEA<\/strong><\/td>\n<\/tr>\n<tr style=\"height: 23px;\">\n<td style=\"width: 100px; text-align: center; height: 23px;\">05\/09\/2017<\/td>\n<td style=\"width: 68px; text-align: center; height: 23px;\">10:30<\/td>\n<td style=\"width: 135px; text-align: center; height: 23px;\">\u00bf?<\/td>\n<td style=\"width: 249px; text-align: center; height: 23px;\">Rueda de Prensa<\/td>\n<td style=\"width: 291.849px; text-align: center; height: 23px;\">Asoc. FQ Pa\u00eds Vasco<\/td>\n<\/tr>\n<tr style=\"height: 46px;\">\n<td style=\"width: 100px; text-align: center; height: 46px;\">08\/09\/2017<\/td>\n<td style=\"width: 68px; text-align: center; height: 46px;\">15:00-20:00<\/td>\n<td style=\"width: 135px; text-align: center; height: 46px;\">Gasteiz, c\/ General Loma<\/td>\n<td style=\"width: 249px; text-align: center; height: 46px;\">Mesa Informativa<\/td>\n<td style=\"width: 291.849px; text-align: center; height: 46px;\">Asoc FQ Araba<\/td>\n<\/tr>\n<tr style=\"height: 46px;\">\n<td style=\"width: 100px; text-align: center; height: 46px;\">08\/09\/2017<\/td>\n<td style=\"width: 68px; text-align: center; height: 46px;\">9:00-14:00<\/td>\n<td style=\"width: 135px; text-align: center; height: 46px;\">Barakaldo, Hospital de Cruces<\/td>\n<td style=\"width: 249px; text-align: center; height: 46px;\">Mesa Informativa<\/td>\n<td style=\"width: 291.849px; text-align: center; height: 46px;\">Asoc FQ Bizkaia<\/td>\n<\/tr>\n<tr style=\"height: 46px;\">\n<td style=\"width: 100px; text-align: center; height: 46px;\">08\/09\/2017<\/td>\n<td style=\"width: 68px; text-align: center; height: 46px;\">20:30-24:00<\/td>\n<td style=\"width: 135px; text-align: center; height: 46px;\">Gasteiz, Sala Jimy Jazz<\/td>\n<td style=\"width: 249px; text-align: center; height: 46px;\">Concierto Solidario: I Think soul y Joseba B. Lenoir.<\/td>\n<td style=\"width: 291.849px; text-align: center; height: 46px;\">Asoc FQ Araba<\/td>\n<\/tr>\n<tr style=\"height: 70px;\">\n<td style=\"width: 100px; text-align: center; height: 70px;\">08\/09\/2017<\/td>\n<td style=\"width: 68px; text-align: center; height: 70px;\">19:00-21:00<\/td>\n<td style=\"width: 135px; text-align: center; height: 70px;\">Ondarroa<\/td>\n<td style=\"width: 249px; text-align: center; height: 70px;\">Fiesta para dar aliento a los besos salados: Baile, m\u00fasica, trago solidario\u2026<\/td>\n<td style=\"width: 291.849px; text-align: center; height: 70px;\">Asoc FQ Gipuzkoa<\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n<h3><span style=\"color: #4dd0e1;\"><strong>\u00a1OS ESPERAMOS!<\/strong><\/span><\/h3>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=&#8221;3.0.69&#8243; background_position_1=&#8221;top_left&#8221; background_repeat_1=&#8221;no-repeat&#8221; make_fullwidth=&#8221;on&#8221;][et_pb_column type=&#8221;4_4&#8243;][et_pb_text _builder_version=&#8221;3.0.69&#8243; background_layout=&#8221;light&#8221; text_orientation=&#8221;left&#8221; border_style=&#8221;solid&#8221; disabled=&#8221;off&#8221; disabled_on=&#8221;||on&#8221;]<\/p>\n<p><span style=\"font-size: 13pt; font-family: lato-regular;\"><strong>05\/09\/2017 10:30 &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp; &nbsp;<\/strong><\/span><br \/>\n<span style=\"font-size: 13pt; font-family: lato-regular;\"> Rueda de Prensa Asociaci\u00f3n FQ Pa\u00eds Vasco<\/span><\/p>\n<p><span style=\"font-size: 13pt; font-family: lato-regular;\"><strong>08\/09\/2017 15:00-20:00 &nbsp;<\/strong><\/span><br \/>\n<span style=\"font-size: 13pt; font-family: lato-regular;\"> Mesa Informativa &nbsp; Asociaci\u00f3n FQ Araba&nbsp; Gasteiz &nbsp;en &nbsp;c\/ General Loma<\/span><\/p>\n<p><span style=\"font-size: 13pt; font-family: lato-regular;\"><strong>08\/09\/2017 9:00-14:00 &nbsp;<\/strong><\/span><br \/>\n<span style=\"font-size: 13pt; font-family: lato-regular;\"> Mesa Informativa Asociaci\u00f3n FQ Bizkaia en Hospital de Cruces Barakaldo<\/span><\/p>\n<p><span style=\"font-size: 13pt; font-family: lato-regular;\"><strong>08\/09\/2017 20:30-24:00 &nbsp;<\/strong><\/span><br \/>\n<span style=\"font-size: 13pt; font-family: lato-regular;\"> Concierto Solidario Asociaci\u00f3n &nbsp;FQ Araba: &nbsp;I Think soul y Joseba B. Lenoir.Gasteiz, en Sala Jimy Jazz<\/span><\/p>\n<p><span style=\"font-size: 13pt; font-family: lato-regular;\"><strong>08\/09\/2017 19:00-21:00<br \/>\n<\/strong>Fiesta para dar aliento a los besos salados Asociaci\u00f3n &nbsp;FQ Gipuzkoa en Ondarroa &#8211; Baile, m\u00fasica, trago solidario<\/span><\/p>\n<h3>\u00a1ITXAROTEN DIZUEGU!<\/h3>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"<p><div class=\"et_pb_row et_pb_row_0 et_pb_row_empty\">\n\t\t\t\t\n\t\t\t\t\n\t\t\t\t\n\t\t\t\t\n\t\t\t\t\n\t\t\t<\/div> Irailak 8 Fibrosi Kistikoaren nazioarteko eguna Fibrosi Kistikoaren (FK) nazioarteko egunaren harira Euskadiko Fibrosi Kistikoaren elkarteak programa zabala prestatu du, kalera irtengo dira ekimen desberdinen bitartez gaixo eta hauen familien aldarrikapenak ezagutzera emateko. \u201cMusu Gaziei Arnasa ematen\u201d lelopean; Orokorrean gizartearen, eta zehazki FK dutenen eta hauen senideen, parte hartze aktiboa bilatzen dute desberdintasunak errespetatzea, [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":204638,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"categories":[46],"tags":[],"class_list":["post-204700","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-berri-elkarteak"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v24.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Aldarrikapenak 2017 FKaren Nazioarteko eguna - FQ EUSKADI<\/title>\n<meta name=\"description\" content=\"Euskadiko FKaren \u201cMusu Gaziei Arnasa ematen\u201d lelopean. 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