In January of 2018, I took an employer-based online wellness survey that included a CBC (blood draw and analysis).\u00a0 I received an email stating that my white blood cell count (WBC) was significantly elevated and if I had other symptoms, I should contact my primary care provider (PCP).\u00a0\u00a0Jeg hadde nattesvette og overdreven svetting p\u00e5 dagtid, s\u00e5 jeg bestilte time.<\/strong><\/p>\n My past medical history consisted of breast cancer in 2002 and several years of painful joints, bones, and fatigue.\u00a0 In 2004, I had a PET-CT that was read as \u201cconsistent with metastatic breast cancer\u201d with\u00a0no offering of a differential diagnosis<\/strong>. Benbiopsien inneholdt benfragmenter og arrvev, s\u00e5 PET-CT-funnene ble avfeid som ufarlige.<\/p>\n Min fastlege konstaterte at b\u00e5de antall hvite blodlegemer og betennelsesmark\u00f8rene var forh\u00f8yet, og da hun s\u00e5 tilbake p\u00e5 resultatene, la hun merke til at verdiene hadde steget gradvis i minst seks \u00e5r. P\u00e5 CT-bildene ble aortaen min beskrevet som \u201cfortykket i hele omkretsen\u201d.\u201d<\/p>\n Reumatologen stilte diagnosen arteritt, en autoimmun sykdom.\u00a0\u00a0Etter 8 m\u00e5neder med h\u00f8ydoserte steroider hadde ingenting endret seg.<\/strong>\u00a0 En vaskul\u00e6r spesialist mente at fortykkelsen i aorta ikke hadde noe med en autoimmun sykdom \u00e5 gj\u00f8re, da han aldri hadde sett noe lignende f\u00f8r. Neste stopp var National Institute of Health (NIH). Den vaskul\u00e6re spesialisten ved NIH ga meg en liste over\u00a0fem mulige tilstander<\/strong>, men han var ganske sikker p\u00e5 at jeg hadde\u00a0Erdheim-Chester-syndromet (ECD)<\/strong>, en sjelden form for blodkreft.<\/p>\n Jeg hadde ataksi (en ust\u00f8 gang); et symptom p\u00e5 ECD. Onkologen gjentok bildediagnostiske unders\u00f8kelser som viste at to forgreninger fra aortaen hadde blitt fullstendig blokkert siden unders\u00f8kelsene mine startet.\u00a0\u00a0Tid er avgj\u00f8rende\u00a0<\/strong>med denne sykdommen, og den hadde \u00f8delagt kroppen min uten at jeg visste det i 14 \u00e5r. Blodpr\u00f8ven min viste en mark\u00f8r for ECD. Behandlingen ble satt i gang, og jeg begynte umiddelbart \u00e5 f\u00f8le meg bedre. Jeg vil sannsynligvis aldri slutte med behandlingen mot denne sykdommen, med mindre det finnes en kur. I l\u00f8pet av 14 \u00e5r,\u00a0my case had been reviewed by at least 30 physicians and closely reviewed by 11 physicians before the diagnosis of ECD was made.<\/strong>\u00a0 It is a very rare disease (<1000 cases worldwide) and is not well known in the medical community as it was only described as a histiocytic neoplasm blood cancer 6 years ago.\u00a0 The time from onset of symptoms to diagnosis of ECD is estimated at 4.5 years.\u00a0 The disease is thought to be more prevalent than the numbers suggest.<\/p>\n Grunnen til at jeg skrev dette, er \u00e5 \u00f8ke bevisstheten om denne g\u00e5tefulle sykdommen, slik at folk kan f\u00e5 en diagnose og behandling s\u00e5 tidlig som mulig.\u00a0<\/strong>\u00a0Vennligst send dette videre til venner og andre. Jeg f\u00f8lte at jeg m\u00e5tte vise meg frem for \u00e5 \u00f8ke bevisstheten, for \u00e5 bidra til \u00e5 bremse eller stoppe sykdommens utvikling, og for \u00e5 \u00f8ke oppmerksomheten rundt denne sykdommen, slik at den blir riktig diagnostisert og behandlet tidlig.<\/p>\n F\u00f8lg disse lenkene for mer informasjon om\u00a0tegn, symptomer<\/a>,\u00a0organp\u00e5virkning<\/a>, og\u00a0behandling<\/a>.<\/p>","protected":false},"excerpt":{"rendered":" Tid er avgj\u00f8rende n\u00e5r det gjelder denne sykdommen, og den hadde \u00f8delagt kroppen min uten at jeg visste det i 14 \u00e5r. \u2013 av Patty Jackson<\/p>","protected":false},"author":20,"featured_media":19761,"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":[272],"tags":[],"class_list":["post-30044","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-voices-of-ecd"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/posts\/30044","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\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/comments?post=30044"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/posts\/30044\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/media\/19761"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/media?parent=30044"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/categories?post=30044"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/tags?post=30044"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}