{"id":51370,"date":"2019-08-28T04:35:52","date_gmt":"2019-08-28T09:35:52","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/endokrinologiske-ressurser\/"},"modified":"2026-05-05T22:15:19","modified_gmt":"2026-05-06T03:15:19","slug":"endokrinologiske-ressurser","status":"publish","type":"page","link":"https:\/\/www.erdheim-chester.org\/no\/endokrinologiske-ressurser\/","title":{"rendered":"Endokrinologiske 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;0px||0px||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; global_colors_info=&raquo;{}&raquo;]<\/p>\n<p>Erdheim-Chester sykdom (ECD) er en sv\u00e6rt sjelden type blodkreft som er vanskelig \u00e5 diagnostisere og kan manifestere seg p\u00e5 en rekke komplekse m\u00e5ter. Siden ECD er indikert som underdiagnostisert, er det avgj\u00f8rende \u00e5 \u00f8ke bevisstheten over hele verden, spesielt i det medisinske milj\u00f8et. Hematologer, sammen med andre klinikere, patologer og radiologer, spiller en avgj\u00f8rende rolle i \u00e5 identifisere ECD. Hvis leger n\u00f8yaktig og raskt kan gjenkjenne ECD hos en pasient, finnes det levedyktige FDA-godkjente og off-label behandlinger tilgjengelige for \u00e5 forbedre livskvaliteten, bremse progresjonen av den livstruende sykdommen, og i noen tilfeller til og med muligens reversere skaden for\u00e5rsaket av lidelsen. N\u00f8kkelen til et vellykket eller mer positivt utfall er tidlig diagnose.<\/p>\n<p>[\/et_pb_text][et_pb_video src=&raquo;https:\/\/youtu.be\/TiI3jHqepDI&raquo; _builder_version=&raquo;4.27.4&#8243; _module_preset=&raquo;default&raquo; width=&raquo;50%&raquo; module_alignment=&raquo;center&raquo; global_colors_info=&raquo;{}&raquo;][\/et_pb_video][\/et_pb_column][\/et_pb_row][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_text _builder_version=&raquo;4.27.4&#8243; _module_preset=&raquo;default&raquo; global_colors_info=&raquo;{}&raquo;]<\/p>\n<h2>Viktige punkter for endokrinologer<\/h2>\n<ul>\n<li>Ingen av de patologiske endringene er unike for ECD \u2013 <strong>kliniske og radiografiske funn er n\u00f8kkelen til diagnose.<\/strong><\/li>\n<li>H\u00f8y mistanke om ECD hos pasienter med typisk \u00abh\u00e5rete nyre\u00bb, retroperitoneal eller beninvolvering, spesielt ved samtidig diabetes insipidus.<\/li>\n<li>Diabetes insipidus og\/eller hypogonadisme kan g\u00e5 forut for diagnosen med flere \u00e5r.<\/li>\n<li>Binyreinnkapsling\/infiltrasjon f\u00f8rer vanligvis ikke til prim\u00e6r binyrebarksvikt; sentral binyrebarksvikt er sjelden, men m\u00e5 vurderes.<\/li>\n<li>Alle sentrale og perifere kjertler kan infiltreres, men hormonelle forstyrrelser er hyppigere enn synlige morfologiske anomalier.<\/li>\n<li>Hormonelle mangler kan oppst\u00e5 flere \u00e5r etter diagnosen, og de m\u00e5 derfor reevalueres p\u00e5 \u00e5rlig basis.<\/li>\n<li>Menn er i fare for infertilitet og b\u00f8r f\u00e5 informasjon om s\u00e6dkonservering.<\/li>\n<li>Metabolsk syndrom ved ECD er ikke godt studert; fedme, dyslipidemi, hypertensjon og dysglykemi b\u00f8r adresseres.<\/li>\n<li>Sv\u00e6rt viktig \u00e5 utf\u00f8re en PET-CT-skanning fra isse til t\u00e5 (helkropp) for \u00e5 fange opp diametafyseal involvering rundt kneleddet og unders\u00f8ke for multi-organinvolvering.<\/li>\n<li>ECD kan sameksistere med Langerhans cellehistiocytose (LCH) eller myeloisk neoplasi.<\/li>\n<li>Molekyl\u00e6re studier spiller en stadig viktigere rolle i diagnose og behandling.<\/li>\n<\/ul>\n<p>[\/et_pb_text][et_pb_text _builder_version=&raquo;4.27.5&#8243; _module_preset=&raquo;default&raquo; hover_enabled=&raquo;0&#8243; global_colors_info=&raquo;{}&raquo; sticky_enabled=&raquo;0&#8243;]<\/p>\n<h2>Kontakt en ECD-erfaren endokrinolog<\/h2>\n<h5>Fady Hannah-Shmouni, MD, DABIM, FRCPC<\/h5>\n<p>E-post: <a href=\"mailto:fady.hannah-shmouni@nih.gov\">fady.hannah-shmouni@nih.gov<\/a><\/p>\n<h5>Carine Courtillot, MD<\/h5>\n<p>E-post: <a href=\"mailto:carine.courtillot@aphp.fr\">carine.courtillot@aphp.fr<\/a><\/p>\n<h5>Skand Shekhar, MD<\/h5>\n<p>Telefon: <a href=\"tel:301-451-1866\">301-451-1866<\/a><\/p>\n<p><strong>Kontakt ECDGA pasientnavigator<\/strong><\/p>\n<p><a href=\"mailto:Belinda.Cobb@erdheim-chester.org\">Belinda Cobb<\/a><\/p>\n<p>Hvis du er interessert i \u00e5 tilby dette materialet for bevisstgj\u00f8ring og utdanningsform\u00e5l, vennligst <a href=\"https:\/\/www.erdheim-chester.org\/no\/kontakt-oss\/\">kontakt oss<\/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]Erdheim-Chester sykdom (ECD) er en sv\u00e6rt sjelden type blodkreft som er vanskelig \u00e5 diagnostisere og kan manifestere seg p\u00e5 [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":51373,"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-51370","page","type-page","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/pages\/51370","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=51370"}],"version-history":[{"count":11,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/pages\/51370\/revisions"}],"predecessor-version":[{"id":130278,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/pages\/51370\/revisions\/130278"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/media\/51373"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/media?parent=51370"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}