{"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":"tribute-to-raina-lets-end-ecd","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/zh\/tribute-to-raina-lets-end-ecd\/","title":{"rendered":"\u81f4\u656c\u96f7\u5a1c\uff0c\u8ba9\u6211\u4eec\u7ec8\u7ed3\u65e9\u671f\u513f\u7ae5\u53d1\u80b2\u969c\u788d\uff08ECD\uff09\uff01"},"content":{"rendered":"<p><em>\u4f5c\u8005\uff1a\u514b\u91cc\u65af\u00b7\u57c3\u6587\u65af\u2014\u20142020\u5e74ECD\u5ba3\u4f20\u5468<\/em><\/p>\n<p>\u6211\u7684\u59b9\u59b9\u96f7\u5a1c\u88ab\u8bca\u65ad\u51fa\u60a3\u6709\u4e00\u79cd\u5728\u8bb8\u591a\u65b9\u9762\u4e0e\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u76f8\u4f3c\u7684\u7ec4\u7ec7\u7ec6\u80de\u75c5\u3002\u5979\u4e0e\u75c5\u9b54\u82f1\u52c7\u6297\u4e89\u4e86\u6570\u5e74\uff0c\u751a\u81f3\u5fcd\u53d7\u4e86\u4e00\u6b21\u5f02\u5e38\u75db\u82e6\u7684\u9aa8\u9ad3\u79fb\u690d\u624b\u672f\u3002 \u5e78\u8fd0\u7684\u662f\uff0c\u6211\u7684\u914d\u578b\u4e0e\u5979\u5339\u914d\uff0c\u8fd9\u8ba9\u5979\u80fd\u4e0e\u6211\u4eec\u591a\u76f8\u4f34\u4e00\u6bb5\u65f6\u95f4\uff0c\u54ea\u6015\u53ea\u662f\u77ed\u6682\u7684\u65f6\u5149\u3002\u53bb\u5e74\u5e74\u521d\uff0c\u5728\u5979\u88ab\u786e\u8bca\u75c5\u60c5\u590d\u53d1\u540e\u7684\u51e0\u4e2a\u6708\u5185\uff0c\u5979\u4fbf\u79bb\u4e16\u4e86\u3002.<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>\u5f53\u8bd5\u56fe\u5e94\u5bf9\u50cfECD\u8fd9\u6837\u7684\u7f55\u89c1\u75c5\uff0c\u6216\u5176\u4ed6\u7f55\u89c1\u7ec4\u7ec7\u7ec6\u80de\u75c5\u65f6\uff0c\u4f60\u4f1a\u5f88\u5feb\u610f\u8bc6\u5230\uff0c\u4e0e\u5176\u4ed6\u75be\u75c5\u76f8\u6bd4\uff0c\u76f8\u5173\u4fe1\u606f\u5341\u5206\u532e\u4e4f\uff0c\u516c\u4f17\u5bf9\u6b64\u7684\u8ba4\u77e5\u5ea6\u4e5f\u5f88\u4f4e\u3002\u8fd9\u7ed9\u672c\u5c31\u8eab\u5904\u8270\u96be\u5883\u5730\u7684\u60a3\u8005\u5e26\u6765\u4e86\u989d\u5916\u7684\u6311\u6218\u3002 \u901a\u8fc7\u966a\u4f34\u59d0\u59d0\u7684\u7ecf\u5386\uff0c\u4ee5\u53ca\u5728\u6bcf\u5468\u7535\u8bdd\u4e2d\u4e0eECD\u60a3\u8005\u4ea4\u6d41\uff0c\u6211\u53d1\u73b0\u8fd9\u79cd\u8ba4\u77e5\u4e0d\u8db3\u5f80\u5f80\u4e0d\u4ec5\u5b58\u5728\u4e8e\u666e\u901a\u4eba\u7fa4\u4e2d\uff0c\u533b\u7597\u4e13\u4e1a\u4eba\u5458\u4e5f\u540c\u6837\u5982\u6b64\u3002\u4ed6\u4eec\u6b63\u662f\u6211\u4eec\u4f9d\u8d56\u7684\u3001\u8d1f\u8d23\u68c0\u6d4b\u3001\u8bca\u65ad\u3001\u6cbb\u7597\u65b9\u6848\uff0c\u751a\u81f3\u4ec5\u4ec5\u662f\u5ba1\u6279\u4fdd\u9669\u7406\u8d54\u7684\u4e13\u4e1a\u4eba\u58eb\u3002 \u8fd9\u5bfc\u81f4\u60a3\u8005\u4e0d\u5f97\u4e0d\u957f\u9014\u8dcb\u6d89\u624d\u80fd\u83b7\u5f97\u4e13\u79d1\u62a4\u7406\uff0c\u8fd8\u5f15\u53d1\u4e86\u4ece\u7ecf\u6d4e\u8d1f\u62c5\u5230\u5355\u7eaf\u5f00\u836f\u7b49\u4e00\u7cfb\u5217\u95ee\u9898\u3002.<\/p>\n<p>\u63d0\u9ad8\u516c\u4f17\u610f\u8bc6\uff0c\u5e76\u5c3d\u5feb\u5206\u4eab\u8fd9\u4e00\u7c7b\u7f55\u89c1\u75be\u75c5\u9886\u57df\u7684\u6700\u65b0\u8fdb\u5c55\uff0c\u5bf9\u4e8e\u6539\u5584\u6709\u9700\u8981\u7684\u60a3\u8005\u7684\u8bca\u7597\u81f3\u5173\u91cd\u8981\u3002ECDGA \u59cb\u7ec8\u7ad9\u5728\u7b2c\u4e00\u7ebf\uff0c\u6211\u5f88\u8363\u5e78\u80fd\u4ee5\u4efb\u4f55\u529b\u6240\u80fd\u53ca\u7684\u65b9\u5f0f\uff0c\u5728\u73b0\u5728\u548c\u672a\u6765\u4e3a\u8fd9\u4e2a\u7fa4\u4f53\u8d21\u732e\u81ea\u5df1\u7684\u529b\u91cf\u3002.<\/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":"","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\/zh\/wp-json\/wp\/v2\/posts\/19323","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/comments?post=19323"}],"version-history":[{"count":3,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/19323\/revisions"}],"predecessor-version":[{"id":175295,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/19323\/revisions\/175295"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media\/19324"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media?parent=19323"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/categories?post=19323"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/tags?post=19323"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}