\u5f53\u5e0c\u671b\u6e3a\u832b\u4e4b\u9645\uff0c\u8fd9\u4f4d\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u60a3\u8005\u9047\u5230\u4e86\u4e00\u4e2a\u7aed\u5c3d\u5168\u529b\u7684\u533b\u7597\u56e2\u961f\uff0c\u4ed6\u4eec\u4e3a\u4ed6\u5e26\u6765\u4e86\u91cd\u83b7\u65b0\u751f\u7684\u5e0c\u671b\uff0c\u8ba9\u4ed6\u5f97\u4ee5\u62e5\u62b1\u5d2d\u65b0\u7684\u4eba\u751f\u3002.<\/p>\n
\u4f5c\u8005\uff1a\u4e9a\u5f53\u00b7\u683c\u6797<\/p>\n
2017\u5e747\u6708\uff0c\u6211\u63a5\u5230\u4e86\u4e00\u901a\u6539\u53d8\u6211\u4eba\u751f\u7684\u7535\u8bdd\u3002.<\/p>\n
\u5728\u8fc7\u53bb\u7684\u4e09\u5e74\u91cc\uff0c\u6211\u4e00\u76f4\u5728\u4e0d\u540c\u7684\u4e13\u79d1\u533b\u751f\u4e4b\u95f4\u8f97\u8f6c\uff1b\u5750\u5728\u8bca\u5ba4\u91cc\uff0c an unusual constellation of symptoms and abnormal laboratory results<\/strong> \u800c\u533b\u751f\u4eec\u5374\u4e00\u7b79\u83ab\u5c55\u3002\u4ed6\u4eec\u4e00\u8fb9\u5728\u75c5\u5386\u4e0a\u5306\u5306\u8bb0\u4e0b\u51e0\u7b14\uff0c\u4e00\u8fb9\u63d0\u51fa\u4e00\u4e9b\u770b\u6cd5\uff0c\u968f\u540e\u4fbf\u4e0e\u6211\u63e1\u624b\uff0c\u5e76\u5c06\u6211\u8f6c\u8bca\u7ed9\u53e6\u4e00\u4f4d\u4e13\u79d1\u533b\u751f\u3002\u4e5f\u8bb8\u4ed6\u4eec\u80fd\u7ed9\u6211\u4e00\u4e2a\u7b54\u6848\u3002.<\/p>\n \u4e9a\u5f53\u4e0e\u8d1f\u8d23\u5236\u5b9a\u5176\u6cbb\u7597\u65b9\u6848\u7684\u4e00\u7ec4\u533b\u751f\u8fdb\u884c\u4e86\u4f1a\u9762\u3002.<\/p>\n \u7ecf\u8fc7\u4e09\u5e74\u7684\u5bfb\u627e\uff0c\u6211\u7ec8\u4e8e\u6765\u5230\u4e86\u660e\u5c3c\u82cf\u8fbe\u5dde\u7f57\u5207\u65af\u7279\u5e02\u7684\u6885\u5965\u8bca\u6240\u3002\u8fd9\u91cc\u88ab\u79f0\u4e3a\u201c\u7389\u7c73\u7530\u91cc\u7684\u5947\u8ff9\u201d\uff0c\u662f\u4e16\u754c\u5404\u5730\u7684\u4eba\u4eec\u524d\u6765\u5bfb\u6c42\u7b54\u6848\u7684\u5730\u65b9\u30022017\u5e74\uff0c\u6211\u63a5\u5230\u4e86\u6885\u5965\u8bca\u6240\u6253\u6765\u7684\u7535\u8bdd\u3002\u7ec8\u4e8e\uff0c\u4ed6\u4eec\u7ed9\u6211\u63d0\u4f9b\u4e86\u4e00\u4e9b\u7b54\u6848\u3002.<\/p>\n \u6211\u88ab\u8bca\u65ad\u51fa\u60a3\u6709\u4e00\u79cd\u540d\u4e3a\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\uff08\u7b80\u79f0ECD\uff09\u7684\u7f55\u89c1\u764c\u75c7\u3002.<\/strong> It\u2019s a blood cancer, and while all ECD patients tend to share some common symptoms and manifestations on imaging tests, etc., the severity of the disease can range from relatively benign to life-threatening.<\/p>\n \u6211\u89c9\u5f97\u81ea\u5df1\u5f88\u5e78\u8fd0\uff0c\u80fd\u5728\u90a3\u4e2a\u65f6\u5019\u88ab\u786e\u8bca\u3002.<\/strong> In 2008, Kathy Brewer established the Erdheim-Chester Disease Global Alliance (ECDGA). She\u2019d lost her husband the year prior after a long battle with illness, and it was only after the autopsy that a diagnosis was made. It was discovered that ECD was the disease he\u2019d been suffering from. ECDGA has not only brought increased awareness of the disease to the medical community, but its support has also led to significant advances in understanding how the disease works and how to treat it.<\/p>\n \u6885\u5965\u8bca\u6240\u7684\u56e2\u961f\u7acb\u5373\u4e3a\u6211\u5b89\u6392\u4e86\u6cbb\u7597\u3002\u5f53\u67d0\u79cd\u6cbb\u7597\u65b9\u6cd5\u5bf9\u6211\u65e0\u6548\u65f6\uff0c\u4ed6\u4eec\u5c31\u4f1a\u91cd\u65b0\u5546\u8ba8\uff0c\u5e76\u5236\u5b9a\u53e6\u4e00\u79cd\u65b9\u6848\u3002 \u5728\u63a5\u4e0b\u6765\u7684\u56db\u5e74\u91cc\uff0cJithma Abeykoon\u3001Gaurav Goyal\u3001Ronald Go \u548c Matthew Koster \u533b\u751f\u4e0e\u6885\u5965\u8bca\u6240\u53ca\u5168\u7403\u5404\u5730\u7684\u533b\u5e08\u548c\u4e13\u5bb6\u901a\u529b\u5408\u4f5c\uff0c\u81f4\u529b\u4e8e\u4e3a\u6211\u5bfb\u627e\u6709\u6548\u7684\u6cbb\u7597\u65b9\u6848\u3002 \u901a\u8fc7\u5bf9\u7ec4\u7ec7\u6d3b\u68c0\u6837\u672c\u8fdb\u884c\u65b0\u4e00\u4ee3\u6d4b\u5e8f\uff0c\u4ed6\u4eec\u53d1\u73b0\u4e86\u4e00\u79cd\u4ed6\u4eec\u8ba4\u4e3a\u53ef\u901a\u8fc7\u5316\u7597\u8fdb\u884c\u9776\u5411\u6cbb\u7597\u7684\u6fc0\u6d3b\u7a81\u53d8\u3002\u6211\u4e8e2021\u5e747\u6708\u5f00\u59cb\u63a5\u53d7\u8be5\u6cbb\u7597\uff0c\u5f88\u9ad8\u5174\u5730\u62a5\u544a\uff0c\u52302022\u5e744\u6708\uff0c\u6211\u5df2\u8fbe\u5230\u4e34\u5e8a\u5b8c\u5168\u7f13\u89e3\uff0c\u4e14\u5f71\u50cf\u5b66\u4e0a\u63a5\u8fd1\u5b8c\u5168\u7f13\u89e3\u3002.<\/p>\n \u6211\u91cd\u65b0\u627e\u56de\u4e86\u751f\u6d3b\u3002.<\/strong><\/p>\n \u4ec5\u51ed\u8a00\u8bed\uff0c\u6211\u5b9e\u5728\u65e0\u6cd5\u5145\u5206\u8868\u8fbe\u6211\u5bf9\u90a3\u4e9b\u81ea\u60a3\u75c5\u4ee5\u6765\u2014\u2014\u4ece\u6211\u7b2c\u4e00\u6b21\u611f\u5230\u201c\u6709\u4e9b\u4e0d\u5bf9\u52b2\u201d\u7684\u90a3\u4e00\u523b\u8d77\u2014\u2014\u4e00\u76f4\u7167\u987e\u6211\u7684\u533b\u751f\u548c\u533b\u52a1\u4eba\u5458\u6240\u6000\u6709\u7684\u611f\u6fc0\u4e4b\u60c5\u548c\u656c\u4f69\u4e4b\u60c5\u3002\u201d<\/p>\n When I was at my lowest and most afraid, with my symptoms worsening and treatment not working, Dr. Abeykoon looked at me and told me to have \u201chope\u201d \u2014 so I clung to hope. \u800c\u6b64\u523b\uff0c\u6211\u5750\u5728\u8fd9\u91cc\uff0c\u5fc3\u4e2d\u5145\u6ee1\u4e86\u53e6\u4e00\u79cd\u5e0c\u671b\u2014\u2014\u4e00\u79cd\u5ef6\u4f38\u81f3\u9065\u8fdc\u672a\u6765\u7684\u5e0c\u671b\uff0c\u90a3\u539f\u672c\u4e0d\u53ef\u80fd\u4e4b\u4e8b\uff0c\u7adf\u7a81\u7136\u53d8\u5f97\u53ef\u80fd\u4e86\u3002.<\/strong><\/p>\n \u201c\u7389\u7c73\u5730\u91cc\u7684\u5947\u8ff9\u201d\uff0c\u786e\u5b9e\u5982\u6b64\u3002.<\/strong><\/p>","protected":false},"excerpt":{"rendered":" When hope was in short supply, this Erdheim-Chester disease patient found a medical team that went above and beyond, bringing him the hope he needed to gain a life he […]<\/p>\n","protected":false},"author":20,"featured_media":20243,"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-30221","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-voices-of-ecd"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/30221","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\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/comments?post=30221"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/30221\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media\/20243"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media?parent=30221"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/categories?post=30221"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/tags?post=30221"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}