{"id":19323,"date":"2020-09-13T23:47:06","date_gmt":"2020-09-13T23:47:06","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=19323"},"modified":"2026-08-19T07:22:51","modified_gmt":"2026-08-19T12:22:51","slug":"hyllest-til-raina-la-oss-avslutte-ecd","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/nb\/tribute-to-raina-lets-end-ecd\/","title":{"rendered":"Hyllest til Raina \u2013 La oss f\u00e5 slutt p\u00e5 ECD!"},"content":{"rendered":"<p><em>Av Chris Evans \u2013 ECD-bevissthetsuken 2020<\/em><\/p>\n<p>Min s\u00f8ster, Raina, fikk diagnosen en histiocytisk sykdom som p\u00e5 mange m\u00e5ter ligner p\u00e5 Erdheim-Chester-syndromet. Hun kjempet tappert mot sykdommen i flere \u00e5r og gjennomgikk til og med en uvanlig smertefull benmargstransplantasjon. Heldigvis var jeg en passende donor for henne, og det forlenget livet hennes sammen med oss, i det minste for en kort stund. Hun gikk bort tidlig i fjor, bare noen f\u00e5 m\u00e5neder etter at tilbakefallet hennes ble diagnostisert.<a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2020\/09\/Chris-and-Raina-Evans.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"alignright wp-image-19324 size-medium\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2020\/09\/Chris-and-Raina-Evans-300x298.jpg\" alt=\"\" width=\"300\" height=\"298\" srcset=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2020\/09\/Chris-and-Raina-Evans-300x298.jpg 300w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2020\/09\/Chris-and-Raina-Evans-150x150.jpg 150w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2020\/09\/Chris-and-Raina-Evans.jpg 750w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/><\/a><\/p>\n<p>It was my experiences with Raina, through her journey, that brought me to the Erdheim Chester Disease Global Alliance (ECDGA). My family and I initially discovered the ECDGA during the difficult diagnosis and early stages of her treatment. The compassion of the staff was remarkable and they spent time giving us advice on seeking oncological specialists- like the amazing doctors: Dr. Eli Diamond, Dr. Eric Jacobsen and\u00a0 Dr. Ken McClain. Advice on social services was invaluable and would help my sister cope and manage aspects of her treatment and indeed her day to day life.<\/p>\n<p>N\u00e5r man pr\u00f8ver \u00e5 takle en sjelden sykdom som ECD eller andre sjeldne histiocytiske lidelser, innser man snart at det ikke finnes mye informasjon tilgjengelig, og at bevisstheten rundt disse sykdommene er lav sammenlignet med andre sykdommer. Dette medf\u00f8rer ytterligere utfordringer for pasienter som allerede sliter med en vanskelig situasjon. Mine erfaringer med s\u00f8steren min, og samtalene jeg har hatt med ECD-pasienter under de ukentlige samtalene, har vist at denne manglende bevisstheten ofte ikke bare gjelder folk flest, men ogs\u00e5 helsepersonell. Dette er kanskje nettopp de fagpersonene vi er avhengige av n\u00e5r det gjelder testing, diagnose, behandlingsalternativer eller ganske enkelt for \u00e5 f\u00e5 godkjent forsikringskravet v\u00e5rt. Dette f\u00f8rer til at man m\u00e5 reise lengre avstander for \u00e5 motta spesialisert behandling, samt andre problemer som spenner fra \u00f8konomiske utfordringer til det \u00e5 f\u00e5 utlevert reseptbelagte medisiner.<\/p>\n<p>\u00c5 \u00f8ke bevisstheten og dele de nyeste fremskrittene innenfor denne sjeldne sykdomsgruppen s\u00e5 raskt som mulig, er avgj\u00f8rende for \u00e5 forbedre pasientomsorgen for dem som trenger det. ECDGA st\u00e5r i frontlinjen, og jeg er be\u00e6ret over \u00e5 kunne bidra til dette fellesskapet p\u00e5 alle m\u00e5ter jeg kan, b\u00e5de n\u00e5 og i fremtiden.<\/p>\n<p>&nbsp;<\/p>","protected":false},"excerpt":{"rendered":"<p>By Chris Evans &#8211; ECD Awareness Week 2020 My sister, Raina, was diagnosed with a histiocytic disorder similar to Erdheim-Chester Disease in many ways. She fought valiantly against the disease [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":19324,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","cybocfi_hide_featured_image":"","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[67,70],"tags":[55,101,83,54,56,102,52],"class_list":["post-19323","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-community-support","category-research-awareness","tag-advocacy","tag-awareness","tag-blood-cancer","tag-blood-disorder","tag-erdheim-chester","tag-histiocytosis","tag-rare-disease"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/posts\/19323","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/comments?post=19323"}],"version-history":[{"count":3,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/posts\/19323\/revisions"}],"predecessor-version":[{"id":175295,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/posts\/19323\/revisions\/175295"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/media\/19324"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/media?parent=19323"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/categories?post=19323"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/tags?post=19323"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}