{"id":30076,"date":"2024-12-31T12:02:30","date_gmt":"2024-12-31T18:02:30","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=30076"},"modified":"2025-10-02T09:57:53","modified_gmt":"2025-10-02T14:57:53","slug":"%e5%85%a8%e5%ae%b6%e4%ba%ba%e9%bd%90%e5%bf%83%e5%8d%8f%e5%8a%9b%e5%af%b9%e6%8a%97%e7%bd%95%e8%a7%81%e7%97%85","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/zh\/fighting-rare-disease-as-a-family\/","title":{"rendered":"\u5168\u5bb6\u4eba\u9f50\u5fc3\u534f\u529b\u5bf9\u6297\u7f55\u89c1\u75c5"},"content":{"rendered":"

\u4e00\u4e2a\u82f1\u56fd\u5bb6\u5ead\u5982\u4f55\u9762\u5bf9\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u3002.<\/strong><\/p>\n

\u4f5c\u8005\uff1a\u5207\u65af\u59ae\u00b7\u683c\u6797
\n2018\u5e749\u670813\u65e5<\/p>\n

\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\uff08ECD\uff09\u60a3\u8005\u6bcf\u5929\u90fd\u5728\u4e3a\u81ea\u5df1\u7684\u8eab\u5fc3\u5065\u5eb7\u800c\u594b\u6597\u3002\u540c\u6837\uff0c\u62a4\u7406\u4eba\u5458\u4e5f\u5728\u6bcf\u5929\u8fdb\u884c\u7740\u8fd9\u6837\u7684\u594b\u6597\u3002\u5f88\u591a\u65f6\u5019\uff0c\u90a3\u4e9b\u53d1\u751f\u5728\u5e55\u540e\u3001\u9690\u85cf\u5728\u75be\u75c5\u80cc\u540e\u7684\u6545\u4e8b\uff0c\u65e2\u672a\u88ab\u8bb2\u8ff0\uff0c\u4e5f\u672a\u88ab\u542c\u95fb\u3002 \u4e00\u4f4d\u7167\u62a4\u8005\u6177\u6168\u5730\u5e94\u5141\uff0c\u8bb2\u8ff0\u4e86\u7167\u62a4\u8005\u6bcf\u5929\u90fd\u8981\u9762\u5bf9\u7684\u3001\u9519\u7efc\u590d\u6742\u7684\u5e55\u540e\u6545\u4e8b\u3002.<\/p>\n

\u7433\u8fbe\u00b7\u7f57\u5170\u5fb7\u7684\u6545\u4e8b\u8be6\u7ec6\u8bb2\u8ff0\u4e86\u5979\u4f5c\u4e3a\u6df1\u7231\u7684\u59b9\u59b9\u683c\u4f26\u8fbe\u7684\u62a4\u7406\u8005\u6240\u7ecf\u5386\u7684\u751f\u6d3b\uff0c\u4ee5\u53ca\u8fd9\u4e2a\u5bb6\u5ead\u4e0d\u5f97\u4e0d\u9762\u5bf9\u7684\u79cd\u79cd\u56f0\u96be\u3002.<\/p>\n

\u5728\u683c\u4f26\u8fbe\u88ab\u786e\u8bca\u524d\u7684\u8fd1\u5341\u5e74\uff0c\u4ee5\u53ca\u5979\u82f1\u5e74\u65e9\u901d\u524d\u7684\u5341\u4e8c\u5e74\uff0c\u5979\u7684\u65e9\u671f\u8ba4\u77e5\u969c\u788d\uff08ECD\uff09\u5386\u7a0b\u4fbf\u5df2\u5f00\u59cb\u3002 \u7433\u8fbe\u548c\u5bb6\u4eba\u5f00\u59cb\u6ce8\u610f\u5230\u683c\u4f26\u8fbe\u7684\u884c\u4e3a\u51fa\u73b0\u4e86\u4e00\u4e9b\u7ec6\u5fae\u53d8\u5316\uff0c\u4f8b\u5982\u5403\u8fc7\u671f\u98df\u7269\u3001\u5fd8\u8bb0\u5173\u7076\u706b\u3001\u5728\u4e58\u5750\u4e8613\u5e74\u7684\u516c\u4ea4\u8f66\u4e0a\u9519\u8fc7\u5e38\u4e0b\u7684\u7ad9\u70b9\u3001\u603b\u662f\u53e3\u6e34\uff0c\u4ee5\u53ca\u603b\u89c9\u5f97\u81ea\u5df1\u6709\u6d41\u611f\u75c7\u72b6\u3002 \u683c\u4f26\u8fbe\u751a\u81f3\u4f1a\u505a\u51fa\u4e00\u4e9b\u5947\u602a\u7684\u4e3e\u52a8\uff0c\u968f\u540e\u53d1\u51fa\u4e0d\u5408\u65f6\u5b9c\u7684\u7b11\u58f0\u3002.<\/p>\n

\u4f5c\u4e3a\u4e00\u4f4d\u666e\u901a\u3001\u6e29\u67d4\u3001\u52e4\u52b3\u7684\u4e2d\u5e74\u5987\u5973\uff0c\u8fd9\u4e9b\u884c\u4e3a\u663e\u7136\u4e0e\u5e38\u4eba\u4e0d\u540c\uff0c\u65e2\u5947\u602a\u53c8\u4ee4\u4eba\u62c5\u5fe7\u3002\u5bb6\u4eba\u5e38\u79f0\u683c\u4f26\u8fbe\u4e3a\u201c\u8ff7\u8ff7\u7cca\u7cca\u7684\u201d\uff0c\u5e76\u8bf4\u8fd9\u53ea\u662f\u5979\u5230\u4e86\u201c\u90a3\u4e2a\u5e74\u7eaa\u201d\u7684\u602a\u5f02\u8868\u73b0\u3002\u9057\u61be\u7684\u662f\uff0c\u8fd9\u4e9b\u201c\u90a3\u4e2a\u5e74\u7eaa\u201d\u7684\u602a\u5f02\u884c\u4e3a\u975e\u4f46\u6ca1\u6709\u597d\u8f6c\uff0c\u53cd\u800c\u6108\u6f14\u6108\u70c8\uff0c\u8ba9\u5bb6\u4eba\u66f4\u52a0\u5fe7\u5fc3\u5fe1\u5fe1\u3002 \u5979\u53e3\u6e34\u5f97\u5389\u5bb3\uff0c\u683c\u4f26\u8fbe\u5f00\u59cb\u559d\u624b\u8fb9\u80fd\u627e\u5230\u7684\u4efb\u4f55\u4e1c\u897f\u3002\u5979\u7684\u5e73\u8861\u611f\u4e5f\u8d8a\u6765\u8d8a\u96be\u4ee5\u63a7\u5236\u3002\u8fd9\u4e24\u9879\u75c7\u72b6\u8ba9\u7433\u8fbe\u4ee5\u4e3a\u59d0\u59d0\u53ea\u662f\u53d8\u6210\u4e86\u9152\u9b3c\u3002\u5f53\u65f6\u4ed6\u4eec\u5b8c\u5168\u6ca1\u60f3\u5230\uff0c\u4e8b\u5b9e\u5e76\u975e\u5982\u6b64\u3002.<\/p>\n

\u7531\u4e8e\u653f\u5e9c\u524a\u51cf\u5f00\u652f\uff0c\u533b\u7597\u8d44\u6e90\u96be\u4ee5\u83b7\u5f97\u3002\u7433\u8fbe\u8ba4\u4e3a\uff0c\u683c\u4f26\u8fbe\u6700\u8fd1\u51fa\u73b0\u7684\u5f02\u5e38\u884c\u4e3a\u53ef\u80fd\u662f\u8111\u7624\u6240\u81f4\u3002\u7531\u4e8e\u7f3a\u4e4f\u653f\u5e9c\u8d44\u91d1\uff0c\u4e14\u533b\u751f\u4eec\u8ba4\u4e3a\u8fd9\u662f\u8111\u51fa\u8840\uff0c\u56e0\u6b64\u6ca1\u6709\u8fdb\u884c\u8fdb\u4e00\u6b65\u68c0\u67e5\uff0c\u800c\u662f\u8ba4\u4e3a\u8fd9\u4e9b\u75c7\u72b6\u4f1a\u968f\u7740\u65f6\u95f4\u63a8\u79fb\u81ea\u884c\u6d88\u5931\u3002.<\/p>\n

\u548c\u8bb8\u591a\u5176\u4ed6\u60c5\u51b5\u4e00\u6837\uff0c\u75c7\u72b6\u975e\u4f46\u6ca1\u6709\u6d88\u5931\uff0c\u53cd\u800c\u65e5\u76ca\u52a0\u91cd\uff0c\u7ed9\u5bb6\u5ead\u5e26\u6765\u7684\u538b\u529b\u4e5f\u968f\u4e4b\u589e\u52a0\u3002\u75c7\u72b6\u5305\u62ec\uff1a\u8fdb\u98df\u6216\u996e\u6c34\u65f6\u54b3\u55fd\/\u545b\u54b3\u3001\u5e73\u8861\u5931\u8c03\u5bfc\u81f4\u8dcc\u5012\u3001\u8180\u80f1\u529f\u80fd\u5931\u8c03\u3001\u5927\u4fbf\u5931\u7981\u3001\u6d41\u6d8e\u8fc7\u591a\u3001\u611f\u67d3\u9891\u53d1\u3001\u51fa\u73b0\u5e7b\u89c9\uff0c\u751a\u81f3\u9700\u8981\u591a\u6b21\u4f4f\u9662\u6cbb\u7597\u3002 \u6709\u4e00\u6b21\uff0c\u533b\u751f\u7ed9\u683c\u4f26\u8fbe\u63d2\u4e86\u5bfc\u5c3f\u7ba1\uff0c\u4f46\u8fd9\u53cd\u800c\u5f15\u53d1\u4e86\u66f4\u591a\u95ee\u9898\u3002\u683c\u4f26\u8fbe\u4f1a\u626f\u52a8\u5bfc\u5c3f\u7ba1\uff0c\u5728\u4e0d\u6070\u5f53\u7684\u65f6\u95f4\u548c\u5730\u70b9\u6392\u5c3f\uff0c\u6216\u8005\u5e72\u8106\u5b8c\u5168\u4e0d\u6392\u5c3f\u3002\u8fd9\u7ed9\u5bb6\u4eba\u5e26\u6765\u4e86\u5de8\u5927\u7684\u8d1f\u62c5\u3002\u6b64\u65f6\uff0c\u5979\u88ab\u8bca\u65ad\u4e3a\u591a\u7076\u6027\u8111\u6897\u6b7b\u6027\u75f4\u5446\u3002.<\/p>\n

\u5728\u8fd9\u6bb5\u8270\u96be\u65f6\u671f\uff0c\u5168\u5bb6\u4eba\u56db\u5904\u5bfb\u6c42\u5e2e\u52a9\uff01\u5f53\u65f6\u683c\u4f26\u8fbe\u5df2\u5e74\u8fc7\u4e94\u5341\uff0c\u5374\u6839\u672c\u627e\u4e0d\u5230\u9002\u5408\u5979\u8fd9\u4e2a\u5e74\u9f84\u6bb5\u6216\u6ee1\u8db3\u5168\u5bb6\u9700\u6c42\u7684\u4e92\u52a9\u56e2\u4f53\u3002 \u5f53\u65f6\u552f\u4e00\u53ef\u83b7\u5f97\u7684\u652f\u63f4\u5b9e\u9645\u4e0a\u5e76\u672a\u5e26\u6765\u4efb\u4f55\u7f13\u89e3\u3002\u7531\u4e8e\u683c\u4f26\u8fbe\u88ab\u8ba4\u4e3a\u5728\u7cbe\u795e\u4e0a\u5177\u5907\u81ea\u4e3b\u51b3\u7b56\u80fd\u529b\uff0c\u56e0\u6b64\u5728\u8fd9\u4e9b\u62a4\u7406\u4eba\u5458\u7684\u7167\u6599\u4e0b\uff0c\u5979\u7ecf\u5e38\u4f1a\u56e0\u8fdb\u98df\u6216\u996e\u6c34\u800c\u564e\u4f4f\u3002\u5c3d\u7ba1\u5bb6\u4eba\u5df2\u544a\u77e5\u62a4\u7406\u4eba\u5458\u683c\u4f26\u8fbe\u4e0d\u80fd\u98df\u7528\u67d0\u4e9b\u98df\u7269\u6216\u996e\u54c1\uff0c\u4f46\u62a4\u7406\u4eba\u5458\u4ecd\u5fc5\u987b\u9075\u4ece\u683c\u4f26\u8fbe\u7684\u610f\u613f\u548c\u9700\u6c42\u3002.<\/p>\n

\u7ecf\u8fc7\u8fd110\u5e74\u7684\u8270\u8f9b\u594b\u6597\uff0c\u201c\u968f\u540e\uff0c\u771f\u6b63\u7684\u8003\u9a8c\u624d\u771f\u6b63\u5f00\u59cb\u2026\u2026\u201d\u7433\u8fbe\u8bf4\u9053\u3002 \u683c\u4f26\u8fbe\u5df2\u7ecf\u65e0\u6cd5\u884c\u8d70\uff0c\u60a3\u6709\u53cc\u91cd\u5931\u7981\uff0c\u5589\u5499\u56e0\u9891\u7e41\u545b\u54b3\u800c\u53d7\u635f\uff0c\u8eab\u4f53\u72b6\u51b5\u4e0e\u591a\u53d1\u6027\u786c\u5316\u75c7\u6781\u4e3a\u76f8\u4f3c\u3002\u7ecf\u8fc7\u8f97\u8f6c\u6c42\u533b\uff0c\u52a0\u4e0a\u7433\u8fbe\u548c\u5bb6\u4eba\u7684\u575a\u6301\u4e0d\u61c8\uff0c\u7ec8\u4e8e\u6709\u4e86\u56de\u62a5\u3002\u4ed6\u4eec\u6700\u7ec8\u88ab\u786e\u8bca\u4e3a\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u3002.<\/p>\n

\u8fd9\u4e00\u8bca\u65ad\u7ed3\u679c\u4ee4\u4eba\u5927\u5403\u4e00\u60ca\uff0c\u6bd5\u7adf\u4ed6\u4eec\u5df2\u7ecf\u9971\u53d7\u591a\u5e74\u714e\u71ac\uff0c\u5374\u59cb\u7ec8\u4e0d\u77e5\u9053\u81ea\u5df1\u7a76\u7adf\u60a3\u4e86\u4ec0\u4e48\u75c5\u3002\u957f\u671f\u5904\u4e8e\u672a\u77e5\u72b6\u6001\u5bf9\u8eab\u5fc3\u90fd\u662f\u6781\u5927\u7684\u8003\u9a8c\uff0c\u4f46\u8bca\u65ad\u7ed3\u679c\u7684\u51fa\u7089\u5e76\u672a\u7ed3\u675f\u8fd9\u573a\u714e\u71ac\u3002\u7531\u4e8e\u8bca\u65ad\u6765\u5f97\u592a\u665a\uff0c\u4ed6\u4eec\u672a\u80fd\u53ca\u65f6\u53d7\u76ca\u4e8e\u90a3\u4e9b\u80fd\u5e2e\u52a9ECD\u60a3\u8005\u5728\u4e00\u5b9a\u7a0b\u5ea6\u4e0a\u91cd\u65b0\u638c\u63a7\u81ea\u8eab\u5065\u5eb7\u7684\u836f\u7269\u3002.<\/p>\n

\u683c\u4f26\u8fbe\u5f88\u5feb\u5c31\u8981\u88ab\u9001\u8fdb\u517b\u8001\u9662\u4e86\u3002\u683c\u4f26\u8fbe\u7684\u5973\u513f\u4eec\u975e\u5e38\u62c5\u5fc3\u5979\u4f1a\u56e0\u564e\u98df\u800c\u6b7b\uff0c\u8fd9\u7b80\u76f4\u6210\u4e86\u8fd9\u4e2a\u5bb6\u5ead\u7684\u4e00\u573a\u6d3b\u751f\u751f\u7684\u5669\u68a6\u3002\u683c\u4f26\u8fbe\u53bb\u4e16\u524d\u4e00\u5468\uff0c\u5979\u544a\u8bc9\u7433\u8fbe\uff0c\u5979\u5df2\u7ecf\u538c\u5026\u4e86\u8fd9\u4e00\u5207\uff0c\u538c\u5026\u4e86\u6323\u624e\u3002 2016\u5e7410\u670819\u65e5\uff0c\u5728\u5979\u4f84\u5973\u7684\u751f\u65e5\u5f53\u5929\uff0c\u683c\u4f26\u8fbe\u53bb\u4e16\u4e86\u3002.<\/p>\n

ECD\u4e0d\u4ec5\u662f\u5bf9\u60a3\u8005\u800c\u8a00\u7684\u4e00\u573a\u6218\u6597\uff0c\u4e5f\u662f\u5bf9\u60a3\u8005\u8eab\u8fb9\u7684\u62a4\u7406\u4eba\u5458\u548c\u5bb6\u5c5e\u800c\u8a00\u7684\u4e00\u573a\u8270\u8f9b\u5386\u7a0b\u3002\u5bf9\u4e8eECD\u60a3\u8005\u800c\u8a00\uff0c\u65e9\u671f\u8bca\u65ad\u81f3\u5173\u91cd\u8981\uff0c\u56e0\u4e3a\u5176\u5668\u5b98\u6240\u53d7\u7684\u957f\u671f\u635f\u5bb3\u5f80\u5f80\u65e0\u6cd5\u9006\u8f6c\u3002.<\/p>\n

\u201c\u5173\u6000\u662f\u4e00\u79cd\u5728\u4e4e\u7684\u72b6\u6001\uff1b\u5b83\u662f\u4eba\u7c7b\u6e29\u67d4\u4e4b\u60c5\u7684\u6e90\u6cc9\u3002\u201d\u2014\u2014 \u7f57\u6d1b\u00b7\u6885<\/strong><\/em><\/p>","protected":false},"excerpt":{"rendered":"

What one UK family faced with Erdheim-Chester Disease. By Chesnee Green September 13, 2018 Erdheim-Chester Disease (ECD) patients are fighting a daily battle with their mental and physical health. Likewise, […]<\/p>\n","protected":false},"author":20,"featured_media":103763,"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":[272],"tags":[],"class_list":["post-30076","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\/30076","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=30076"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/30076\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media\/103763"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media?parent=30076"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/categories?post=30076"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/tags?post=30076"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}