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\u00a0I had night sweats and excessive daytime sweating so I made an appointment.<\/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>.\u00a0 The bone biopsy contained bone fragments and scar tissue so the PET-CT findings were written off as non-threatening.<\/p>\n My PCP found that both the WBC and inflammatory markers were elevated and looking retrospectively, she noticed that they had been on a slow climb for at least six years.\u00a0 On CT, my aorta was described as \u201ccircumferentially thickened.\u201d<\/p>\n Rheumatology diagnosed me with Arteritis, an autoimmune disorder.\u00a0\u00a0After 8 months of high-dose steroids, nothing had changed.<\/strong>\u00a0 A vascular specialist felt the aortic thickening was not related to an autoimmune disorder as he had never seen anything like that before.\u00a0 Next was the National Institute of Health (NIH).\u00a0\u00a0 The NIH Vascular specialist gave me a list of\u00a0five possible conditions<\/strong>, however, he was reasonably certain that I had\u00a0\u039d\u03cc\u03c3\u03bf\u03c2 Erdheim-Chester (ECD)<\/strong>, a rare form of blood cancer.<\/p>\n I had ataxia (a wobbly walk); a symptom of ECD.\u00a0 The oncologist repeated imaging scans that demonstrated two branches off the aorta had shut off completely since the onset of my workup.\u00a0\u00a0Time is of the essence\u00a0<\/strong>with this disease and it had been destroying my body unknowingly for 14 years. \u00a0My blood had a marker for ECD.\u00a0 Treatment started and I immediately began feeling better.\u00a0 I will likely never discontinue therapy for this disease unless a cure is found.\u00a0 Over the course of 14 years,\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 The reason I wrote this is to raise awareness of this enigmatic disease is so that people can get diagnosed and treated early in the process.\u00a0<\/strong>\u00a0Please send this to your friends and others.\u00a0 I felt the need to put my face out there to raise awareness, to help slow or stop the progression of the disease, and to bring awareness of this disease so it is diagnosed correctly and treated early.<\/p>\n Follow these links for more information about\u00a0signs, symptoms<\/a>,\u00a0organ involvement<\/a>, \u03ba\u03b1\u03b9\u00a0treatment<\/a>.<\/p>","protected":false},"excerpt":{"rendered":" \u039f \u03c7\u03c1\u03cc\u03bd\u03bf\u03c2 \u03b5\u03af\u03bd\u03b1\u03b9 \u03ba\u03c1\u03af\u03c3\u03b9\u03bc\u03bf\u03c2 \u03c0\u03b1\u03c1\u03ac\u03b3\u03bf\u03bd\u03c4\u03b1\u03c2 \u03c3\u03b5 \u03b1\u03c5\u03c4\u03ae \u03c4\u03b7\u03bd \u03b1\u03c3\u03b8\u03ad\u03bd\u03b5\u03b9\u03b1, \u03b7 \u03bf\u03c0\u03bf\u03af\u03b1 \u03ba\u03b1\u03c4\u03ad\u03c3\u03c4\u03c1\u03b5\u03c6\u03b5 \u03c4\u03bf \u03c3\u03ce\u03bc\u03b1 \u03bc\u03bf\u03c5 \u03c7\u03c9\u03c1\u03af\u03c2 \u03bd\u03b1 \u03c4\u03bf \u03b3\u03bd\u03c9\u03c1\u03af\u03b6\u03c9 \u03b5\u03b4\u03ce \u03ba\u03b1\u03b9 14 \u03c7\u03c1\u03cc\u03bd\u03b9\u03b1. \u2013 \u03c4\u03b7\u03c2 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\/el\/wp-json\/wp\/v2\/posts\/30044","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/comments?post=30044"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/posts\/30044\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/media\/19761"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/media?parent=30044"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/categories?post=30044"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/el\/wp-json\/wp\/v2\/tags?post=30044"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}