{"id":50598,"date":"2019-03-10T12:09:48","date_gmt":"2019-03-10T16:09:48","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/hematologiske-ressurser\/"},"modified":"2025-05-21T14:31:52","modified_gmt":"2025-05-21T18:31:52","slug":"hematologiske-ressurser","status":"publish","type":"page","link":"https:\/\/www.erdheim-chester.org\/no\/hematologiske-ressurser\/","title":{"rendered":"Hematologiske ressurser"},"content":{"rendered":"<p>[et_pb_section fb_built=&raquo;1&#8243; _builder_version=&raquo;4.27.4&#8243; _module_preset=&raquo;default&raquo; background_image=&raquo;https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2024\/12\/Untitled-design-96-1.png&raquo; background_position=&raquo;bottom_center&raquo; background_vertical_offset=&raquo;20%&raquo; custom_padding=&raquo;20px||20px||true|false&raquo; background_last_edited=&raquo;on|desktop&raquo; background_position_tablet=&raquo;bottom_right&raquo; background_position_phone=&raquo;center_right&raquo; global_module=&raquo;28071&#8243; global_colors_info=&raquo;{}&raquo;][et_pb_row _builder_version=&raquo;4.27.4&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{}&raquo;][et_pb_column type=&raquo;4_4&#8243; _builder_version=&raquo;4.27.4&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{}&raquo;][et_pb_dmb_breadcrumbs _builder_version=&raquo;4.27.4&#8243; _module_preset=&raquo;default&raquo; body_text_color=&raquo;#FFFFFF&raquo; body_font_size=&raquo;12px&raquo; link_text_color=&raquo;#35A4BB&raquo; custom_margin=&raquo;||5px||false|false&raquo; custom_padding=&raquo;||0px||false|false&raquo; body_font_size_tablet=&raquo;12px&raquo; body_font_size_phone=&raquo;10px&raquo; body_font_size_last_edited=&raquo;on|desktop&raquo; global_colors_info=&raquo;{}&raquo;][\/et_pb_dmb_breadcrumbs][et_pb_heading title=&raquo;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF90aXRsZSIsInNldHRpbmdzIjp7ImJlZm9yZSI6IiIsImFmdGVyIjoiIn19@&raquo; _builder_version=&raquo;4.27.4&#8243; _dynamic_attributes=&raquo;title&raquo; _module_preset=&raquo;default&raquo; title_font=&raquo;&#8211;et_global_heading_font|300|||||||&raquo; title_text_color=&raquo;#FFFFFF&raquo; title_font_size=&raquo;40px&raquo; custom_margin=&raquo;||3px|||&raquo; title_font_size_tablet=&raquo;&raquo; title_font_size_phone=&raquo;25px&raquo; title_font_size_last_edited=&raquo;on|phone&raquo; global_colors_info=&raquo;{}&raquo;][\/et_pb_heading][et_pb_button button_url=&raquo;https:\/\/www.erdheim-chester.org\/no\/kontakt-oss\/&raquo; button_text=&raquo;Kontakt oss&raquo; _builder_version=&raquo;4.27.4&#8243; _module_preset=&raquo;default&raquo; custom_button=&raquo;on&raquo; button_text_size=&raquo;15px&raquo; button_text_color=&raquo;#C02E43&#8243; button_bg_color=&raquo;rgba(10,22,64,0.53)&raquo; button_border_width=&raquo;0px&raquo; button_icon=&raquo;&#xe60f;||divi||400&#8243; button_icon_color=&raquo;#C02E43&#8243; button_icon_placement=&raquo;left&raquo; button_on_hover=&raquo;off&raquo; global_colors_info=&raquo;{}&raquo; filter_opacity__hover_enabled=&raquo;on|hover&raquo; filter_opacity__hover=&raquo;70%&raquo;][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&raquo;1&#8243; admin_label=&raquo;section&raquo; _builder_version=&raquo;4.16&#8243; global_colors_info=&raquo;{}&raquo;][et_pb_row admin_label=&raquo;rad&raquo; _builder_version=&raquo;4.16&#8243; background_size=&raquo;initial&raquo; background_position=&raquo;top_left&raquo; background_repeat=&raquo;repeat&raquo; global_colors_info=&raquo;{}&raquo;][et_pb_column type=&raquo;4_4&#8243; _builder_version=&raquo;4.16&#8243; custom_padding=&raquo;|||&raquo; global_colors_info=&raquo;{}&raquo; custom_padding__hover=&raquo;|||&raquo;][et_pb_text admin_label=&raquo;Text&raquo; _builder_version=&raquo;4.27.4&#8243; background_size=&raquo;initial&raquo; background_position=&raquo;top_left&raquo; background_repeat=&raquo;repeat&raquo; hover_enabled=&raquo;0&#8243; global_colors_info=&raquo;{}&raquo; sticky_enabled=&raquo;0&#8243;]<\/p>\n<p>ECD er en sv\u00e6rt sjelden type blodkreft som er vanskelig \u00e5 diagnostisere, og som kan arte seg p\u00e5 en rekke komplekse m\u00e5ter. Siden Erdheim-Chester Sykdommen er sannsynligvis underdiagnostisert, og det er derfor viktig \u00e5 \u00f8ke bevisstheten rundt sykdommen i hele verden, spesielt i det medisinske milj\u00f8et. Hematologer spiller, sammen med andre klinikere, patologer og radiologer, en viktig rolle i arbeidet med \u00e5 identifisere ECD. Hvis legene raskt og n\u00f8yaktig kan gjenkjenne ECD hos en pasient, finnes det b\u00e5de FDA-godkjente og off-label-behandlinger som kan forbedre livskvaliteten, bremse utviklingen av den livstruende sykdommen og i noen tilfeller til og med reversere skadene som lidelsen har for\u00e5rsaket. N\u00f8kkelen til et vellykket eller mer positivt utfall er tidlig diagnose.    <\/p>\n<p>Takk til alle medisinske fagpersoner som har bidratt med informasjon og vurderinger for \u00e5 st\u00f8tte opplysningsarbeidet til ECDGA. Deres engasjement for samfunnet vil utgj\u00f8re en forskjell i livene til pasienter og familier over hele verden. <strong><br \/><img loading=\"lazy\" decoding=\"async\" class=\"alignright size-medium wp-image-20417\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2022\/12\/ASH-2018-booth.jpg\" alt=\"\" width=\"300\" height=\"225\" srcset=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2022\/12\/ASH-2018-booth.jpg 320w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2022\/12\/ASH-2018-booth-300x225.jpg 300w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/><\/strong><\/p>\n<h2>Viktige punkter for hematologer<\/h2>\n<ul>\n<li>Ingen av de patologiske forandringene er unike for ECD &#8211; kliniske og radiografiske kjennetegn er avgj\u00f8rende for \u00e5 stille diagnosen.<\/li>\n<li>H\u00f8y mistanke om ECD hos pasienter med typisk &laquo;h\u00e5rete nyre&raquo;, retroperitoneal eller benaffeksjon, spesielt ved samtidig diabetes insipidus.<\/li>\n<li>Det er sv\u00e6rt viktig \u00e5 gjennomf\u00f8re PET-CT-skanning fra toppunkt til t\u00e5 (hele kroppen) for \u00e5 fange opp diafyseal affeksjon rundt kneleddet og unders\u00f8ke for multiorganaffeksjon.<\/li>\n<li>ECD kan sameksistere med Langerhans cellehistiocytose (LCH) eller myeloid neoplasi.<\/li>\n<li>Molekyl\u00e6re studier spiller en stadig viktigere rolle i diagnostisering og behandling.<\/li>\n<\/ul>\n<h2>ECD-Erfarne hematologer<\/h2>\n<p><strong>Ronald S. Go, MD<\/strong><br \/>E-post: <a href=\"mailto:go.ronald@mayo.edu\">go.ronald@mayo.edu<\/a><\/p>\n<p><strong>Gaurav Goyal, MD<\/strong><br \/>E-post: <a href=\"mailto:ggoyal@uabmc.edu\">ggoyal@uabmc.edu<\/a><\/p>\n<p><strong>Paul Hendrie, MD, PhD<\/strong><br \/>E-post: <a href=\"mailto:phendrie@uw.edu\">phendrie@uw.edu<\/a><\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"<p>[et_pb_dmb_breadcrumbs _builder_version=&raquo;4.27.4&#8243; _module_preset=&raquo;default&raquo; body_text_color=&raquo;#FFFFFF&raquo; body_font_size=&raquo;12px&raquo; link_text_color=&raquo;#35A4BB&raquo; custom_margin=&raquo;||5px||false|false&raquo; custom_padding=&raquo;||0px||false|false&raquo; body_font_size_tablet=&raquo;12px&raquo; body_font_size_phone=&raquo;10px&raquo; body_font_size_last_edited=&raquo;on|desktop&raquo; global_colors_info=&raquo;{}&raquo;][\/et_pb_dmb_breadcrumbs]ECD er en sv\u00e6rt sjelden type blodkreft som er vanskelig \u00e5 diagnostisere, og som kan arte seg p\u00e5 en [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","_wds_title":"","_wds_metadesc":"","_wds_focus-keywords":"","_wds_meta-robots-adv":"","_wds_meta-robots-noindex":false,"_wds_meta-robots-nofollow":false,"_wds_meta-robots-index":false,"_wds_meta-robots-follow":false,"_wds_autolinks-exclude":false,"_wds_canonical":"","_wds_redirect":"","_wds_opengraph":[],"_wds_twitter":[],"cybocfi_hide_featured_image":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-50598","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/pages\/50598","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/comments?post=50598"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/pages\/50598\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/media?parent=50598"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}