{"id":57145,"date":"2014-11-20T03:59:37","date_gmt":"2014-11-20T09:59:37","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/symptomer\/"},"modified":"2026-06-30T07:56:02","modified_gmt":"2026-06-30T12:56:02","slug":"symptomer","status":"publish","type":"page","link":"https:\/\/www.erdheim-chester.org\/fr\/symptomer\/","title":{"rendered":"Symptomer"},"content":{"rendered":"<p>[et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; background_image=&#8221;https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2024\/12\/Untitled-design-96-1.png&#8221; background_position=&#8221;bottom_center&#8221; background_vertical_offset=&#8221;20%&#8221; custom_padding=&#8221;15px||15px||true|false&#8221; background_last_edited=&#8221;on|desktop&#8221; background_position_tablet=&#8221;bottom_right&#8221; background_position_phone=&#8221;center_right&#8221; global_module=&#8221;28071&#8243; global_colors_info=&#8221;{}&#8221;][et_pb_row _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_heading title=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF90aXRsZSIsInNldHRpbmdzIjp7ImJlZm9yZSI6IiIsImFmdGVyIjoiIn19@&#8221; _builder_version=&#8221;4.27.4&#8243; _dynamic_attributes=&#8221;title&#8221; _module_preset=&#8221;default&#8221; title_font=&#8221;&#8211;et_global_heading_font|300|||||||&#8221; title_text_color=&#8221;#FFFFFF&#8221; title_font_size=&#8221;40px&#8221; custom_margin=&#8221;||3px|||&#8221; title_font_size_tablet=&#8221;&#8221; title_font_size_phone=&#8221;25px&#8221; title_font_size_last_edited=&#8221;on|phone&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_heading][et_pb_button button_url=&#8221;https:\/\/www.erdheim-chester.org\/no\/kontakt-oss\/&#8221; button_text=&#8221;Kontakt oss&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_button=&#8221;on&#8221; button_text_size=&#8221;15px&#8221; button_text_color=&#8221;#C02E43&#8243; button_bg_color=&#8221;rgba(10,22,64,0.53)&#8221; button_border_width=&#8221;0px&#8221; button_icon=&#8221;&#xe60f;||divi||400&#8243; button_icon_color=&#8221;#C02E43&#8243; button_icon_placement=&#8221;left&#8221; button_on_hover=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221; filter_opacity__hover_enabled=&#8221;on|hover&#8221; filter_opacity__hover=&#8221;70%&#8221;][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; admin_label=&#8221;section&#8221; _builder_version=&#8221;4.16&#8243; global_colors_info=&#8221;{}&#8221;][et_pb_row column_structure=&#8221;1_2,1_2&#8243; use_custom_gutter=&#8221;on&#8221; gutter_width=&#8221;2&#8243; _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;||0px|0px|false|false&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#F2F2F2&#8243; custom_padding=&#8221;40px|30px|40px|30px|true|false&#8221; border_radii=&#8221;on|20px|20px|20px|20px&#8221; box_shadow_style=&#8221;preset2&#8243; box_shadow_vertical=&#8221;4px&#8221; box_shadow_blur=&#8221;8px&#8221; box_shadow_color=&#8221;rgba(0,0,0,0.1)&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;-10px||||false|false&#8221; custom_padding=&#8221;0px||||false|false&#8221; border_radii=&#8221;on|20px|20px|20px|20px&#8221; border_width_all=&#8221;1px&#8221; border_color_all=&#8221;#adadad&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<div class=\"ecd-video-embed\">\n<div class=\"ecd-video-wrapper\">\n<iframe loading=\"lazy\" width=\"560\" height=\"315\" src=\"https:\/\/www.youtube.com\/embed\/videoseries?si=le8vhflyJODmsZ1F&#038;list=PLd9i5JBvapc6iFCerVExlxhyafV3GCwAi\" title=\"YouTube-videospiller\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen=\"\"><\/iframe>\n<\/div>\n<\/div>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;||||false|false&#8221; custom_padding=&#8221;||0px||false|false&#8221; global_colors_info=&#8221;{}&#8221;]ECDGAs YouTube-spilleliste, \u00abOrgan Involvement of ECD by ECDGA\u00bb, inneholder 40 videoer med medisinske fagfolk som diskuterer organp\u00e5virkning ved Erdheim-Chester (ECD), n\u00e5v\u00e6rende behandlingsmetoder og pasientbehandling.[\/et_pb_text][et_pb_button button_url=&#8221;https:\/\/www.youtube.com\/playlist?list=PLd9i5JBvapc6iFCerVExlxhyafV3GCwAi&#8221; url_new_window=&#8221;on&#8221; button_text=&#8221;Se spilleliste&#8221; disabled_on=&#8221;off|off|off&#8221; _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; custom_button=&#8221;on&#8221; button_text_size=&#8221;16px&#8221; button_bg_color=&#8221;#C02E43&#8243; button_border_radius=&#8221;8px&#8221; button_font=&#8221;|600|||||||&#8221; button_use_icon=&#8221;off&#8221; transform_translate_linked__hover=&#8221;off&#8221; custom_padding=&#8221;16px|30px|16px|30px|true|true&#8221; hover_enabled=&#8221;0&#8243; custom_css_main_element=&#8221;width: 100%;||text-align: center;&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221; transform_styles__hover_enabled=&#8221;on|hover&#8221; transform_scale__hover_enabled=&#8221;on|desktop&#8221; transform_translate__hover_enabled=&#8221;on|hover&#8221; transform_rotate__hover_enabled=&#8221;on|desktop&#8221; transform_skew__hover_enabled=&#8221;on|desktop&#8221; transform_origin__hover_enabled=&#8221;on|desktop&#8221; transform_translate__hover=&#8221;0px|-3px&#8221; button_text_color__hover_enabled=&#8221;on|hover&#8221; button_text_color__hover=&#8221;#FFFFFF&#8221; sticky_enabled=&#8221;0&#8243;][\/et_pb_button][\/et_pb_column][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text admin_label=&#8221;Text&#8221; _builder_version=&#8221;4.27.6&#8243; background_size=&#8221;initial&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; global_colors_info=&#8221;{}&#8221;]Symptomene p\u00e5 ECD avhenger av hvilket organ (eller hvilke organer) som er involvert, noe som varierer fra pasient til pasient. Av denne grunn kan ECD-symptomene v\u00e6re forskjellige for hver enkelt pasient. <\/p>\n<p>En enkelt pasient kan ha en annen kombinasjon av disse symptomene, i tillegg til andre. F\u00e5 pasienter har alle de ovennevnte symptomene. Dette er delvis det som gj\u00f8r ECD vanskelig \u00e5 <a href=\"https:\/\/www.erdheim-chester.org\/no\/diagnose\/\"><u>diagnostisere<\/u><\/a>. En ECD-<a href=\"https:\/\/www.erdheim-chester.org\/no\/diagnose\/\"><u>diagnose<\/u><\/a> krever en gjennomgang av symptomer i kombinasjon med bildediagnostikk (PET-CT og MR hvis tilgjengelig) og biopsier utf\u00f8rt av et kunnskapsrikt medisinsk team.   <\/p>\n<p>Alle som mistenker at de kan ha ECD, b\u00f8r s\u00f8ke hjelp fra en kunnskapsrik helsepersonell. En tidligere <a href=\"https:\/\/www.erdheim-chester.org\/no\/diagnose\/\"><u>diagnose<\/u><\/a> vil potensielt gi pasientene den beste sjansen for en vellykket behandlingsplan. <\/p>\n<p>Sent i 2018 resulterte <a href=\"https:\/\/www.erdheim-chester.org\/patient-registry\/\"><u>ECD-pasientregisteret<\/u><\/a> i f\u00f8lgende artikkel om symptomvurdering. Funnene inkluderer en prosenttabell over pasientrapporterte symptomer. Se <a href=\"https:\/\/erdheim-chester.org\/wp-content\/uploads\/2021\/01\/symptoms-Diamond-ECD-SS-Blood-Advances.pdf\"><strong><u>En skala for pasientrapportert symptomvurdering for pasienter med Erdheim-Chester-sykdom<\/u><\/strong><\/a> for \u00e5 l\u00e6re mer.[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=&#8221;1_2,1_2&#8243; use_custom_gutter=&#8221;on&#8221; gutter_width=&#8221;2&#8243; admin_label=&#8221;rad&#8221; _builder_version=&#8221;4.27.6&#8243; background_size=&#8221;initial&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; custom_padding=&#8221;||1px|||&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|||&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_image src=&#8221;https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Symptom-Flyer-with-Jaw.png&#8221; title_text=&#8221;Symptomflyer med kjeve&#8221; show_in_lightbox=&#8221;on&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; border_width_all=&#8221;1px&#8221; border_color_all=&#8221;#d3d3d3&#8243; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][et_pb_text _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;||6px|||&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p style=\"text-align: center;\">\n<p>  Klikk for \u00e5 se i full st\u00f8rrelse.[\/et_pb_text][et_pb_button button_url=&#8221;https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/Symptom-Flyer-with-Jaw.pdf&#8221; url_new_window=&#8221;on&#8221; button_text=&#8221;Last ned PDF-versjonen&#8221; module_class=&#8221;full-button&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;6px||6px||true|false&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_button][\/et_pb_column][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|||&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_text _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]Bare en helsepersonell kan <a href=\"https:\/\/www.erdheim-chester.org\/no\/diagnose\/\"><u>diagnostisere<\/u><\/a> ECD, men noen av de mer vanlige symptomene kan inkludere ett eller flere av f\u00f8lgende:<\/p>\n<ul>\n<li><strong>Beinsmerter.<\/strong> Det vanligste rapporterte symptomet er bensmerter i de lange bena i bena p\u00e5 begge sider (bilateralt). Bensmerter forekommer oftest i kn\u00e6r, skinneben og ankler. Armsmerter kan forekomme sjeldnere og er oftest i overarmene. Mer enn 90 % av pasientene med ECD beskriver smerter, men det er viktig \u00e5 merke seg at noen pasienter aldri har bensmerter, og at plasseringen av smerten i kroppen kan variere.   <\/li>\n<li><strong>Generell uvelhet og andre uspesifikke symptomer.<\/strong> Mange ECD-pasienter rapporterer tretthet, svakhet, vekttap, feber, nattesvette, muskel- og leddsmerter, og\/eller ubehag. Noen pasienter rapporterer influensalignende symptomer som svinger og aldri helt forsvinner. <\/li>\n<li><strong>Nevrologiske symptomer.<\/strong> N\u00e5r ECD p\u00e5virker hjernen, kan balanseproblemer oppst\u00e5, noe som gj\u00f8r det vanskelig \u00e5 g\u00e5, og noen pasienter rapporterer fall. Andre symptomer p\u00e5 nevrologisk involvering inkluderer utydelig tale, svelgeproblemer, hukommelsesproblemer, emosjonelle og\/eller atferdsendringer, og\/eller andre endringer i vanlig sinnsstemning. Ufrivillige, raske \u00f8yebevegelser har ogs\u00e5 blitt observert som et nevrologisk symptom.  <\/li>\n<li><strong>Overdreven t\u00f8rste og vannlating (arginin-vasopressinmangel, ogs\u00e5 kalt diabetes insipidus eller DI).<\/strong>  Dette er noen ganger et av de f\u00f8rste symptomene ECD pasienter st\u00f8ter p\u00e5. N\u00e5r DI er identifisert, kan det enkelt behandles med et legemiddel som kalles desmopressin, som kan gis via en injeksjon (spr\u00f8yte), en pille eller en nesespray. <\/li>\n<li><strong>Hormonelle endringer.<\/strong> ECD-pasienter rapporterer noen ganger endringer i seksuell libido eller orgasme, samt uregelmessigheter i menstruasjonssyklusen for kvinner. Disse symptomene oppst\u00e5r som et resultat av sykdomsinvolvering i hypofysen. Sjeldnere kan ogs\u00e5 sekresjon fra brystvortene (galaktor\u00e9) i frav\u00e6r av graviditet eller f\u00f8dsel forekomme.  <\/li>\n<li><strong>Nyreproblemer.<\/strong> ECD kan p\u00e5virke retroperitoneum (vev rundt nyrer og store blod\u00e5rer som aorta) og nyrer. Smerter i korsryggen, flanken eller magen kan v\u00e6re forbundet med nyreproblemer. Bildediagnostikk rapporterer ofte en \u00abh\u00e5rete nyre\u00bb, eller en lege kan oppdage redusert nyrefunksjon. ECD som p\u00e5virker blod\u00e5rene rundt nyrene kan f\u00f8re til forh\u00f8yet blodtrykk.   <\/li>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row admin_label=&#8221;rad&#8221; _builder_version=&#8221;4.16&#8243; background_size=&#8221;initial&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|||&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_text admin_label=&#8221;Text&#8221; _builder_version=&#8221;4.27.6&#8243; link_text_color=&#8221;#35A4BB&#8221; background_size=&#8221;initial&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<li><strong>Utst\u00e5ende \u00f8yne (eksoftalmus) og\/eller synsvansker.<\/strong> Synsrelaterte problemer kan inkludere bilateral flimring i sidesynet, dobbeltsyn, nedsatt syn eller andre synsforstyrrelser.<\/li>\n<li><strong>S\u00e5r eller kuler under huden (xantomer) eller utslett rundt \u00f8ynene (xantelasma).<\/strong> Gule utvekster p\u00e5 eller n\u00e6r \u00f8yelokkene kan v\u00e6re et symptom p\u00e5 ECD. ECD kan for\u00e5rsake andre gule eller brune kj\u00f8ttfulle kuler i ulike omr\u00e5der av kroppen. <\/li>\n<li><strong>Kortpustethet (dyspn\u00e9) og\/eller hoste.<\/strong> ECD kan p\u00e5virke hjertet og\/eller lungene. Kardiovaskul\u00e6r involvering kan inkludere v\u00e6skeansamling rundt hjertet, infiltrasjon i selve hjertemuskelen, eller betennelse i blod\u00e5rene. Progressiv arrdannelse og fortykning av lungene oppst\u00e5r ved lungeinvolvering. Disse problemene gj\u00f8r det vanskeligere for blodet \u00e5 pumpes ordentlig gjennom kroppen. Hovedsymptomene er brystsmerter eller kortpustethet.    <\/li>\n<li><strong>Kroniske smerter, tretthet, nedstemthet, angst.<\/strong> En stor andel av pasienter med ECD rapporterer kroniske generaliserte (over hele kroppen) smerter og tretthet. Disse symptomene forverres ytterligere av samtidige hum\u00f8rproblemer, noe som resulterer i depresjon og angst. Smerter og tretthet kan vedvare selv om ECD er i remisjon.  <\/li>\n<\/ul>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;]<strong>Neste&gt;<\/strong> <a href=\"https:\/\/www.erdheim-chester.org\/no\/diagnose\/\">Diagnose<\/a>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p><strong>Sist oppdatert:<\/strong> 17.03.2026<\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"<p>ECDGAs YouTube-spilleliste, \u00abOrgan Involvement of ECD by ECDGA\u00bb, inneholder 40 videoer med medisinske fagfolk som diskuterer organp\u00e5virkning ved Erdheim-Chester (ECD), n\u00e5v\u00e6rende behandlingsmetoder og pasientbehandling.Symptomene p\u00e5 ECD avhenger av hvilket organ [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"open","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","cybocfi_hide_featured_image":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-57145","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/pages\/57145","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/comments?post=57145"}],"version-history":[{"count":9,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/pages\/57145\/revisions"}],"predecessor-version":[{"id":163599,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/pages\/57145\/revisions\/163599"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media?parent=57145"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}