{"id":5044,"date":"2020-01-30T19:43:21","date_gmt":"2020-01-30T19:43:21","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=5044"},"modified":"2020-09-22T07:19:09","modified_gmt":"2020-09-22T07:19:09","slug":"%e7%96%bc%e7%97%9b-%e7%96%b2%e5%8a%b3","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/zh\/pain-fatigue\/","title":{"rendered":"\u75bc\u75db\u4e0e\u75b2\u52b3"},"content":{"rendered":"<p><strong>\u5bf9\u8bb8\u591a\u60a3\u8005\u800c\u8a00\uff0c\u75bc\u75db\u548c\u75b2\u52b3\u65f6\u523b\u63d0\u9192\u7740\u4ed6\u4eec\u60a3\u6709\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u3002.<\/strong> \u65e0\u8bba\u662f\u5426\u5b58\u5728BRAF\u7a81\u53d8\uff0cECD\u60a3\u8005\u90fd\u53ef\u80fd\u51fa\u73b0\u75bc\u75db\u548c\u75b2\u52b3\u3002\u8fd9\u4e9b\u75c7\u72b6\u65e2\u53ef\u80fd\u51fa\u73b0\u5728\u65b0\u786e\u8bca\u7684\u60a3\u8005\u8eab\u4e0a\uff0c\u4e5f\u53ef\u80fd\u51fa\u73b0\u5728\u88ab\u8ba4\u4e3a\u5904\u4e8e\u75be\u75c5\u7f13\u89e3\u671f*\u7684\u60a3\u8005\u8eab\u4e0a\u3002.<\/p>\n<p>\u5f97\u76ca\u4e8e\u77e5\u8bc6\u6e0a\u535a\u7684\u533b\u7597\u4e13\u4e1a\u4eba\u5458\u7684\u8f9b\u52e4\u4ed8\u51fa\uff0c\u60a3\u8005\u53ef\u4ee5\u901a\u8fc7\u4e00\u4e9b\u65b9\u6cd5\u6765\u7f13\u89e3\u75bc\u75db\u548c\u75b2\u52b3\u3002.<\/p>\n<p>\u6211\u4eecECD\u62a4\u7406\u4e2d\u5fc3\u7f51\u7edc\u7684\u6700\u65b0\u6210\u5458\u2014\u2014\u9ad8\u62c9\u592b\u00b7\u6208\u4e9a\u5c14\u533b\u751f\uff0c\u4e3a\u5927\u5bb6\u8bb2\u89e3\u4e86\u4e00\u4e9b\u6709\u5e2e\u52a9\u7684\u5efa\u8bae\uff1a<\/p>\n<p>\u201c\u764c\u75c7\u76f8\u5173\u75b2\u52b3\u662f\u4e00\u4e2a\u91cd\u5927\u6311\u6218\uff0c\u76ee\u524d\u5c1a\u65e0\u7b80\u5355\u7684\u89e3\u51b3\u529e\u6cd5\u3002\u8fd0\u52a8\u786e\u5b9e\u662f\u80fd\u591f\u5e2e\u52a9\u60a3\u8005\u7f13\u89e3\u75b2\u52b3\u7684\u6700\u91cd\u8981\u5e72\u9884\u63aa\u65bd\u3002\u7136\u800c\uff0c\u8981\u83b7\u5f97\u6700\u4f73\u6548\u679c\uff0c\u6700\u597d\u901a\u8fc7\u6709\u8ba1\u5212\u7684\u8fd0\u52a8\u9879\u76ee\uff0c\u6bcf\u5468\u8fd0\u52a8\u65f6\u95f4\u81f3\u5c11\u8fbe\u5230150\u5206\u949f\u3002 \u5927\u591a\u6570\u77e5\u540d\u5065\u8eab\u623f\u548c\u533b\u7597\u673a\u6784\u90fd\u63d0\u4f9b\u4e13\u95e8\u9488\u5bf9\u764c\u75c7\u60a3\u8005\u7684\u6b64\u7c7b\u9879\u76ee\u3002\u5982\u679c\u51fa\u73b0\u5f71\u54cd\u8fd0\u52a8\u7684\u75c7\u72b6\uff0c\u6709\u65f6\u8fdb\u884c\u5267\u70c8\u8fd0\u52a8\u53ef\u80fd\u4f1a\u6bd4\u8f83\u56f0\u96be\u3002\u5728\u8fd9\u79cd\u60c5\u51b5\u4e0b\uff0c\u53ef\u4ee5\u4e0e\u60a8\u7684\u533b\u751f\u5546\u8ba8\u5176\u4ed6\u66ff\u4ee3\u65b9\u6848\uff08\u5982\u745c\u4f3d\u3001\u6c34\u4e2d\u8fd0\u52a8\u7b49\uff09\u3002\u201d<\/p>\n<p>\u6208\u4e9a\u5c14\u533b\u751f\u8fd8\u63d0\u5230\u4e86\u60a3\u8005\u53ef\u4ee5\u4e0e\u533b\u751f\u5546\u8ba8\u7684\u5176\u4ed6\u4e00\u4e9b\u9009\u62e9\uff1a<\/p>\n<ul>\n<li>\u540c\u65f6\u4f7f\u7528\u5176\u4ed6\u53ef\u80fd\u5f15\u8d77\u6216\u52a0\u91cd\u75b2\u52b3\u7684\u5fc3\u7406\u6d3b\u6027\u836f\u7269\u2014\u2014\u5982\u963f\u7247\u7c7b\u836f\u7269\u3001\u5b89\u7720\u836f\u7b49\u3002.<\/li>\n<li>\u7761\u7720\u8d28\u91cf\u5dee\u2014\u2014\u53ef\u63a2\u8ba8\u9488\u5bf9\u7761\u7720\u548c\u7126\u8651\u7684\u6cbb\u7597\u65b9\u6cd5<\/li>\n<li>\u836f\u7269\u6cbb\u7597\u65b9\u6848\u2014\u2014\u53ef\u8003\u8651\u4f7f\u7528\u83ab\u8fbe\u975e\u5c3c\u548c\u54cc\u918b\u7532\u916f\u7b49\u5174\u594b\u5242<\/li>\n<li>\u8ba4\u77e5\u884c\u4e3a\u7597\u6cd5\u4e0e\u5fc3\u7406\u6cbb\u7597<\/li>\n<li>\u8eab\u5fc3\u5e72\u9884\u63aa\u65bd\u2014\u2014\u6b63\u5ff5\u51a5\u60f3\u3001\u745c\u4f3d\u7b49\u3002\u5927\u591a\u6570\u57ce\u5e02\u90fd\u6709\u8bb8\u591a\u5730\u65b9\u63d0\u4f9b\u8fd9\u4e9b\u65b9\u6cd5\u7684\u514d\u8d39\u670d\u52a1\u3002.<\/li>\n<\/ul>\n<p>*\u76ee\u524d\u5c1a\u65e0\u6cbb\u6108\u65e9\u671f\u513f\u7ae5\u53d1\u80b2\u969c\u788d\uff08ECD\uff09\u7684\u65b9\u6cd5\u3002\u5f53\u75be\u75c5\u5904\u4e8e\u4f11\u7720\u6216\u4e0d\u6d3b\u8dc3\u72b6\u6001\u65f6\uff0c\u79f0\u4e3a\u201c\u7f13\u89e3\u201d\u3002.<\/p>\n<p>\u4ee5\u4e0b\u94fe\u63a5\u63d0\u4f9b\u4e86\u6709\u5173\u6b64\u4e3b\u9898\u7684\u66f4\u591a\u4fe1\u606f\uff1a<\/p>\n<p><a href=\"https:\/\/www.mayoclinic.org\/diseases-conditions\/cancer\/in-depth\/cancer-fatigue\/art-20047709\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/www.mayoclinic.org\/diseases-conditions\/cancer\/in-depth\/cancer-fatigue\/art-20047709<\/a><\/p>\n<p><a href=\"https:\/\/www.cancer.org\/treatment\/treatments-and-side-effects\/physical-side-effects\/fatigue\/what-is-cancer-related-fatigue.html\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/www.cancer.org\/treatment\/treatments-and-side-effects\/physical-side-effects\/fatigue\/what-is-cancer-related-fatigue.html<\/a><\/p>\n<p><a href=\"https:\/\/youtu.be\/_A2KIbcb4tk\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/youtu.be\/_A2KIbcb4tk<\/a> \uff1a\u7f57\u4f0a\u00b7\u9a6c\u4f50\u5c14\u535a\u58eb\u8c08\u8bbaECD\u60a3\u8005\u7684\u65e5\u5e38\u62a4\u7406\u3002.<\/p>\n<p><a href=\"https:\/\/youtu.be\/QcEVBl9bTpY\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/youtu.be\/QcEVBl9bTpY<\/a>&nbsp;: \u60a3\u8005\u53ca\u5bb6\u5c5e\u53ef\u57282019\u5e74\u60a3\u8005\u53ca\u5bb6\u5c5e\u805a\u4f1a\u4e0a\u5411\u4e13\u5bb6\u54a8\u8be2\u3002.<\/p>\n<p>\u60a8\u8fd8\u53ef\u4ee5\u5728\u6211\u4eec\u7684YouTube\u9891\u9053\u4e0a\u627e\u5230\u5176\u4ed6\u7cbe\u5f69\u4e14\u5185\u5bb9\u4e30\u5bcc\u7684\u89c6\u9891\u3002. <a href=\"https:\/\/www.youtube.com\/channel\/UCYR3skRhqAFWC5PTOGv34JQ\/featured\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/www.youtube.com\/channel\/UCYR3skRhqAFWC5PTOGv34JQ\/featured<\/a><\/p>\n<p>&nbsp;<\/p>\n<p>\u4f5c\u4e3a\u60a3\u8005\u6216\u62a4\u7406\u4eba\u5458\uff0c\u60a8\u53d1\u73b0\u4ec0\u4e48\u65b9\u6cd5\u5bf9\u60a8\u6709\u5e2e\u52a9\uff1f\u8bf7\u8bbf\u95ee\u6211\u4eec\u7684 <a href=\"https:\/\/www.facebook.com\/groups\/784637751599933\/\" target=\"_blank\" rel=\"noopener noreferrer\">ECD Facebook \u7fa4\u7ec4<\/a> \u4e0e\u5176\u4ed6ECD\u60a3\u8005\u548c\u7167\u62a4\u8005\u8fdb\u4e00\u6b65\u8ba8\u8bba\u6b64\u4e8b\uff01<\/p>\n<p>\u60a8\u4e5f\u53ef\u4ee5\u5c06\u7b54\u590d\u901a\u8fc7\u7535\u5b50\u90ae\u4ef6\u53d1\u9001\u81f3 <span class=\"reverse\">chesnee.green@erdheim-chester.org<\/span>.<\/p>","protected":false},"excerpt":{"rendered":"<p>For many patients, pain and fatigue are a constant reminder of having Erdheim-Chester Disease. Pain and fatigue can occur in ECD patients regardless of the presence or absence of BRAF [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":5046,"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":[67],"tags":[55,54,59,53,58,56,69,57,68,52],"class_list":["post-5044","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-community-support","tag-advocacy","tag-blood-disorder","tag-bone-pain","tag-cancer","tag-diabetes-insipidus","tag-erdheim-chester","tag-fatigue","tag-hairy-kidney","tag-pain","tag-rare-disease"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/5044","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=5044"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/5044\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media\/5046"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media?parent=5044"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/categories?post=5044"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/tags?post=5044"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}