{"id":30060,"date":"2024-12-31T11:56:54","date_gmt":"2024-12-31T17:56:54","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=30060"},"modified":"2025-10-04T04:21:49","modified_gmt":"2025-10-04T09:21:49","slug":"i-am-rare","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/it\/i-am-rare\/","title":{"rendered":"Sono unico"},"content":{"rendered":"<h2>Sono unico<\/h2>\n<h3>What I want others to know about my experience with Erdheim-Chester Disease.<\/h3>\n<p>By Janet Bunge<br \/>\nKentucky \u2013 September 10, 2018<\/p>\n<p>In early 2015, after ten years of \u201cWhat is going on, and I really am not a whiny woman,\u201d I was diagnosed with Erdheim-Chester Disease (ECD).\u00a0 The first article I read said that I\u2019d be dead in three years.\u00a0 Well, it\u2019s been three and a half years, and I\u2019m still very much alive, so here is the short story.<\/p>\n<p>Every description of ECD begins with \u201cvery rare.\u201d\u00a0 Articles may include blood cancer, abnormal growth of white blood cells called histiocytes\u2026yada yada.\u00a0 My main oncologist is at Memorial Sloan Kettering (MSK) because Dr. \u201cBrainiac\u201d Diamond researches ECD as his life\u2019s work.\u00a0 I\u2019ve been seen at Mayo Clinic, National Institutes of Health, Duke University.\u00a0 Also, I have spoken, written, and been interviewed at MD Anderson and MSK.\u00a0 I\u2019ve just been taken off of my third chemotherapy in the last three years because of side effects.\u00a0 Even though I consider Dr. Diamond to be the top doctor in my repertoire, I am followed by at least a half-dozen of doctors at the University of Kentucky.\u00a0 I think that I have the distinct pleasure(?) of being the first ECD patient at UK.<\/p>\n<p><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2018\/09\/Janet_2018.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-full wp-image-3561\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2018\/09\/Janet_2018.jpg\" alt=\"\" width=\"1898\" height=\"2205\" srcset=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2018\/09\/Janet_2018.jpg 1898w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2018\/09\/Janet_2018-258x300.jpg 258w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2018\/09\/Janet_2018-768x892.jpg 768w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2018\/09\/Janet_2018-881x1024.jpg 881w\" sizes=\"(max-width: 1898px) 100vw, 1898px\" \/><\/a>I\u2019m grateful for life, and I\u2019m less than grateful to have a chronic disease that is really cancer.\u00a0 So many consider this to be a cancer that is treated, you might be very sick, then it\u2019s over.\u00a0 Has my life changed?\u00a0 Yes!\u00a0 I can\u2019t work in my field as an RN since my stamina is limited.\u00a0 As Dr. Diamond told me, I have been reworked, so the dizziness is here to stay.\u00a0 As a former NICU nurse, caring for babies doesn\u2019t fly with dizziness.\u00a0 Yuck\u2026in spite of lesions that have lurked in my brain, I can think, still.<\/p>\n<p>That\u2019s my story.\u00a0 I can\u2019t even count the number of folks I have shared love and faith with because this gives one an audience!\u00a0 Purpose\u2026.not what I planned for, but can\u2019t argue with God (I\u2019ve tried).<\/p>\n<p>&nbsp;<\/p>\n<p><strong>See other stories about Janet\u2019s journey with ECD:<\/strong><\/p>\n<p>Story written in March 2016 by local newspaper \u2013\u00a0<a href=\"https:\/\/web.archive.org\/web\/20250319112844\/https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2015\/07\/Janet-Bunge-article_Beaumont-Neighborhood.pdf\" target=\"_blank\" rel=\"noopener\">\u201cIf I die tomorrow, God is still in control.\u201d<\/a><\/p>\n<p>July 2016 story written by ECDGA staff \u2013\u00a0<a href=\"https:\/\/web.archive.org\/web\/20250319112844\/https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2016\/09\/Janet-Bunge-Story_FINAL.pdf\" target=\"_blank\" rel=\"noopener\">A Group No One Applies to Join<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>\u2026dopo dieci anni passati a chiedermi \u201cMa che sta succedendo? E io non sono affatto una che si lamenta\u201d, mi \u00e8 stata diagnosticata la malattia di Erdheim-Chester.<\/p>","protected":false},"author":20,"featured_media":3562,"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-30060","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-voices-of-ecd"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/posts\/30060","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/comments?post=30060"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/posts\/30060\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/media\/3562"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/media?parent=30060"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/categories?post=30060"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/tags?post=30060"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}