{"id":1032,"date":"2026-01-14T21:11:06","date_gmt":"2026-01-14T13:11:06","guid":{"rendered":"https:\/\/om-mine.com\/?p=1032"},"modified":"2026-01-14T21:41:17","modified_gmt":"2026-01-14T13:41:17","slug":"beyond-pain-i-wanna-say","status":"publish","type":"post","link":"https:\/\/om-mine.com\/en\/beyond-pain-i-wanna-say\/","title":{"rendered":"\u3010\u75bc\u75db\u4e4b\u5916\uff0c\u6211\u60f3\u8aaa…\u3011\u6ce1\u6ce1\u9f8d\u5712\u904a\u6703\u53f0\u524d\u5e55\u5f8c"},"content":{"rendered":"

Beyond Pain: Front and Backstage of EB Fair<\/strong><\/h2>\n\n\n\n

\u64b0\u6587\u2571\u5433\u6d69\u8ce2@\u5357\u7121\u5357\u6f2bhome
Written by Adrian Ng @Namo Collective\u00a0<\/p>\n\n\n\n

\u3010\u4ee5\u4e0b\u70ba\u6539\u7de8\u7248\u672c\uff0c\u539f\u6587\u7a3f\u520a\u65bc\u7368\u7acb\u8a55\u8ad6@\u5929\u4e0b\u8b80\u8005\u6295\u66f8<\/a>\u3011<\/p>\n\n\n\n

\u300c\u6ce1\u6ce1\u9f8d\u300d\u662f\u4e00\u7a2e\u539f\u540d\u70ba\u5148\u5929\u6027\u8868\u76ae\u9b06\u89e3\u75c7\uff08Hereditary Epidermolysis Bullosa\uff09\u7684\u7f55\u898b\u907a\u50b3\u6027\u76ae\u819a\u75c5\u3002\u7531\u65bc\u8868\u76ae\u8207\u771f\u76ae\u7684\u9023\u7e6b\u57fa\u56e0\u7f3a\u9677\uff0c\u76ae\u819a\u7570\u5e38\u8106\u5f31\u3002\u8f15\u5fae\u6469\u64e6\u6216\u78b0\u649e\uff0c\u90fd\u53ef\u80fd\u9020\u6210\u7834\u76ae\u81bf\u76b0\u3002\u50b7\u53e3\u4e0d\u50c5\u904d\u4f48\u5168\u8eab\u5916\u819a\uff0c\u751a\u81f3\u5305\u542b\u53e3\u8154\u3001\u98df\u9053\u8207\u8178\u80c3\u9ecf\u819c\uff0c\u8b93\u9032\u98df\u3001\u884c\u8d70\u3001\u63db\u85e5\u90fd\u6210\u70ba\u6bcf\u65e5\u5fc5\u9808\u9762\u5c0d\u7684\u75db\u3002<\/p>\n\n\n\n

\u75bc\u75db\u4e0d\u50c5\u662f\u75c5\u60c5\u4e0a\uff0c\u4e5f\u5728\u5916\u754c\u770b\u5f85\u4ed6\u5011\u7684\u773c\u5149\u88e1\u3002\u60a3\u90e8\u56e0\u53cd\u8986\u53d7\u50b7\uff0c\u9020\u6210\u80a2\u9ad4\u6523\u7e2e\u3001\u50b7\u53e3\u7570\u5473\u7b49\u5916\u986f\u75c5\u5fb5\uff0c\u90fd\u9020\u6210\u75c5\u53cb\u6210\u9577\u904e\u7a0b\u4e2d\u8981\u9762\u5c0d\u5927\u91cf\u7570\u6a23\u773c\u5149\u3002\u9019\u4e9b\u773c\u5149\u4e0d\u4e00\u5b9a\u5e36\u8457\u60e1\u610f\uff0c\u6709\u6642\u537b\u662f\u51fa\u65bc\u4e0d\u77e5\u6240\u63aa\u3002\u4e0d\u77e5\u9053\u8a72\u5982\u4f55\u5c0d\u8a71\u3001\u63a5\u89f8\u3002\u9577\u4e45\u4e0b\u4f86\uff0c\u75c5\u53cb\u76f8\u5c0d\u96e3\u4ee5\u958b\u555f\u5c0d\u8a71\uff0c\u6162\u6162\u5c0d\u793e\u4ea4\u7fd2\u6163\u9000\u7e2e\uff0c\u8868\u9054\u8d8a\u5c11\uff0c\u7406\u89e3\u8d8a\u9060\u3002
<\/p>\n\n\n\n

\n

\u4e0a\u53f0\u524d\u7684\u90a3\u9053\u968e\u68af<\/strong><\/h2>\n<\/blockquote>\n\n\n\n

\u9019\u5834\u5712\u904a\u6703\u662f\u95dc\u65bc\u52c7\u6c23\u3001\u4fe1\u4efb\u8207\u611b\u7684\u5206\u4eab\u3002\u6ce1\u6ce1\u9f8d\u75c5\u53cb\u5354\u67032025\u5e74\u8fa6\u4e86\u4e00\u7cfb\u5217\u5f9e\u5fc3\u7406\u89ba\u5bdf\u5230\u53e3\u8a9e\u8a13\u7df4\u6d3b\u52d5\uff0c\u966a\u4f34\u75c5\u53cb\u7df4\u7fd2\u628a\u751f\u547d\u6545\u4e8b\u68b3\u7406\uff0c\u5b78\u7fd2\u770b\u898b\u81ea\u5df1\u5ff5\u982d\u80cc\u5f8c\u7684\u611f\u53d7\uff0c\u7df4\u7fd2\u5982\u4f55\u8b1b\u8ff0\u5167\u5fc3\u611f\u53d7\u3002\u4e00\u6b65\u6b65\u5c07\u81ea\u6211\u8072\u97f3\u5f9e\u5167\u5fc3\u50b3\u5230\u5634\u908a\uff0c\u518d\u5f9e\u5ba4\u5167\u6f14\u7df4\u5230\u6e96\u5099\u8e0f\u4e0a\u5927\u9060\u767e\u7684\u821e\u53f0\u3002
<\/p>\n\n\n\n

\u8b93\u6545\u4e8b\u9806\u5229\u88ab\u770b\u898b\uff0c\u5e55\u5f8c\u540c\u6a23\u9700\u8981\u7d30\u81a9\u7684\u6e96\u5099\u3002\u627f\u63a5\u4e00\u5834\u7f55\u75c5\u516c\u76ca\u6d3b\u52d5\uff0c\u5f97\u5148\u6df1\u5165\u75c5\u53cb\u3001\u5bb6\u5c6c\u3001\u6350\u6b3e\u8005\u3001\u91ab\u7642\u5c08\u5bb6\u591a\u500b\u8996\u89d2\uff0c\u7406\u89e3\u6bcf\u500b\u6301\u4efd\u8005\u7684\u5fc3\u5883\uff0c\u624d\u80fd\u5b8c\u6574\u5448\u73fe\u8b70\u984c\u60f3\u5e36\u51fa\u7684\u4fe1\u5ff5\u3002\u767b\u4e0a\u821e\u53f0\u4ee5\u524d\uff0c\u4e0d\u5230\u4e00\u500b\u6708\u7684\u7c4c\u5099\u671f\uff0c\u66f4\u8b93\u7dca\u5f35\u5ea6\u5927\u5e45\u5347\u7d1a\u3002\u6bcf\u5929\u7686\u5148\u92d2\u591c\u822c\u8d95\u5de5\uff0c\u80fc\u624b\u80dd\u8db3\uff0c\u8de8\u8d8a\u4e00\u9053\u53c8\u4e00\u9053\u96e3\u95dc<\/p>\n\n\n\n

\u7b2c\u4e00\u9053\u96e3\u95dc\uff0c\u5efa\u7acb\u4fe1\u4efb\u3002\u9996\u6b21\u52a0\u5165\u6ce1\u6ce1\u9f8d\u6bcf\u9031\u516d\u7684\u7dda\u4e0a\u805a\u6703\u6642\uff0c\u6703\u8b70\u88f9\u6709\u5341\u5e7e\u4eba\uff0c\u4f46\u958b\u8457\u93e1\u982d\u7684\uff0c\u5c31\u53ea\u6709\u6211\u5011\u8207\u5354\u6703\u57f7\u884c\u9577\u570b\u8015\u3002\u90a3\u6642\uff0c\u6211\u5011\u5fc3\u88f9\u5c31\u611f\u89ba\u5230\u5c0d\u75c5\u53cb\u800c\u8a00\uff0c\u4fe1\u4efb\u65b0\u9762\u5b54\u4e26\u975e\u4e00\u4ef6\u8f15\u6613\u7684\u4e8b\uff0c\u9023\u6253\u958b\u93e1\u982d\uff0c\u4e5f\u6703\u6709\u6240\u7591\u616e\u3002\u70ba\u4e86\u8b93\u5927\u5bb6\u4e86\u89e3\uff0c\u6211\u5011\u4e26\u975e\u50b3\u7d71\u516c\u95dc\u516c\u53f8\uff0c\u6c7a\u5b9a\u9010\u4e00\u8d70\u5230\u93e1\u982d\u524d\uff0c\u4ecb\u7d39\u6bcf\u4e00\u4f4d\u5de5\u4f5c\u4eba\u54e1\uff0c\u8aaa\u51fa\u70ba\u4ec0\u9ebc\u60f3\u6295\u5165\u9019\u5834\u6d3b\u52d5\u3002<\/p>\n\n\n\n

\u5c31\u9019\u6a23\u6574\u500b\u4e5d\u3001\u5341\u6708\u7684\u5468\u672b\uff0c\u908a\u8046\u807d\u75c5\u53cb\u5011\u7684\u6f14\u8b1b\u6392\u7df4\uff0c\u908a\u804a\u804a\u9019\u9663\u5b50\u7684\u611f\u89ba\uff0c\u4e00\u9ede\u4e00\u6ef4\u7e54\u8d77\u5f7c\u6b64\u7684\u95dc\u4fc2\u3002\u9664\u4e86\u56fa\u5b9a\u53c3\u52a0\u7dda\u4e0a\u805a\u6703\uff0c\u6211\u5011\u4ea6\u5b89\u6392\u4e86\u5169\u5834\u8a2a\u8ac7\u3002
<\/p>\n\n\n\n

\u89aa\u8eab\u4e92\u52d5\u5f8c\uff0c\u9b06\u52d5\u4e86\u6211\u5c0d\u6ce1\u6ce1\u9f8d\u7684\u65e2\u5b9a\u5370\u8c61\u3002\u904e\u53bb\uff0c\u5728\u5a92\u9ad4\u4e0a\u770b\u5230\u7684\u75c5\u53cb\u5f62\u8c61\uff0c\u7e3d\u4f34\u96a8\u8457\u6182\u50b7\u97f3\u6a02\u8207\u540c\u60c5\u6558\u4e8b\uff0c\u662f\u76f8\u8f03\u5f31\u5c0f\u7684\u72c0\u614b\u3002\u4f46\u771f\u5be6\u76f8\u8655\u6703\u767c\u73fe\uff0c\u4ed6\u5011\u5728\u884c\u70ba\u8207\u8a00\u8a9e\u9593\uff0c\u5c55\u73fe\u7684\u5176\u5be6\u5c31\u662f\u4e00\u7fa4\u518d\u81ea\u7136\u4e0d\u904e\uff0c\u6d3b\u5f97\u771f\u646f\u3001\u5404\u6709\u6027\u683c\u7684\u500b\u4eba\u3002\u4ed6\u5011\u4e0d\u9700\u8981\u88ab\u904e\u5ea6\u540c\u60c5\uff0c\u53ea\u60f3\u88ab\u5e73\u7b49\u5c0d\u5f85\uff0c\u50cf\u5c0d\u5f85\u6bcf\u500b\u666e\u901a\u4eba\u4e00\u6a23\uff0c\u770b\u898b\u4ed6\u5011\u7684\u5149\u8292\uff0c\u4e5f\u63a5\u7d0d\u4ed6\u5011\u7684\u8106\u5f31\u3002<\/p>\n\n\n\n

\n

\u8981\u50cf\u660e\u661f\u822c\u51fa\u5834<\/strong><\/h2>\n<\/blockquote>\n\n\n\n

\u96e3\u95dc\u4e4b\u4e8c\uff0c\u8eab\u9ad4\u9650\u5236\u3002\u56e0\u70ba\u75bc\u75db\uff0c\u75c5\u53cb\u591a\u534a\u4ee5\u8f2a\u6905\u6276\u52a9\u79fb\u52d5\uff0c\u4e5f\u9700\u907f\u514d\u9577\u6642\u9593\u66dd\u66ec\u5728\u967d\u5149\u4e0b\u3002\u8981\u5728\u6236\u5916\u5927\u578b\u5834\u5730\u5b8c\u6210\u767c\u8868\uff0c\u5c0d\u75c5\u53cb\u800c\u8a00\uff0c\u662f\u9245\u5927\u7684\u6311\u6230\u3002\u4e00\u65b9\u9762\u8981\u5fcd\u8010\u6c57\u6db2\u6ef2\u5165\u50b7\u53e3\uff0c\u4e00\u65b9\u9762\u662f\u773e\u76ee\u777d\u777d\u4e0b\u62ab\u9732\u5fc3\u9748\u7684\u58d3\u529b\u3002<\/p>\n\n\n\n

\"\"
\u51fa\u5834\u524d\u6c99\u9f8d\u7167\u62cd\u651d\u904e\u7a0b<\/em><\/p>\n\n\n\n

\u6015\u50b7\u53e3\u6ef2\u8840\u5f04\u9ad2\u8863\u7269\u3001\u64d4\u5fc3\u6750\u8cea\u904e\u7c97\u78e8\u64e6\u76ae\u819a\uff0c\u75c5\u53cb\u5728\u9078\u64c7\u8863\u670d\u6642\uff0c\u591a\u534a\u4ee5\u6df1\u6697\u8272\u7cfb\u6216\u67d4\u8edf\u68c9\u8cea\u70ba\u4e3b\uff0c\u5e7e\u4e4e\u4e0d\u592a\u6dfb\u8cfc\u65b0\u88dd\u3002\u4f46\u65e2\u7136\u662f\u6d3b\u52d5\u7684\u4e3b\u89d2\uff0c\u7406\u61c9\u4e5f\u8981\u4eae\u9e97\u767b\u5834\u5427\uff01\u65bc\u662f\uff0c\u524d\u4e00\u5929\u5f69\u6392\u6642\u6211\u5011\u7279\u5225\u8acb\u9020\u578b\u5e2b\uff0c\u6839\u64da\u6bcf\u4f4d\u7684\u500b\u6027\u8a2d\u8a08\u500b\u4eba\u9020\u578b\uff0c\u4e26\u9001\u5230\u98ef\u5e97\u4e88\u660e\u5929\u7684\u4e3b\u89d2\u5011\uff0c\u7576\u4f5c\u5c0f\u9a5a\u559c\u3002\u6709\u4f4d\u75c5\u53cb\u4e00\u770b\u5230\u5145\u6eff\u6d3b\u529b\u7684\u300c\u9ede\u9ede\u88dd\u300d\uff0c\u7acb\u523b\u96c0\u8e8d\u5730\u8aaa\uff1a\u300c\u660e\u5929\u6211\u5c31\u7a7f\u9019\u4e00\u4ef6\u4e0a\u53f0\uff01\u300d<\/p>\n\n\n\n

\u6d3b\u52d5\u7576\u5929\uff0c\u75c5\u53cb\u548c\u5bb6\u5c6c\u9678\u7e8c\u6b65\u5165\u8cb4\u8cd3\u5ba4\uff0c\u81c9\u8272\u96e3\u63a9\u7dca\u5f35\u795e\u60c5\u3002\u9020\u578b\u5e2b\u4e00\u908a\u68b3\u7406\u9aee\u578b\uff0c\u4e00\u908a\u8acb\u75c5\u53cb\u70ba\u81ea\u5df1\u6311\u9078\u98fe\u54c1\uff0c\u4f5c\u4e0a\u53f0\u524d\u6700\u5f8c\u9ede\u7db4\u3002\u4f86\u56de\u8a0e\u8ad6\u9593\uff0c\u958b\u59cb\u62ff\u7740\u98fe\u54c1\u554f\uff1a\u300c\u6211\u6234\u9019\u6a23\u662f\u4e0d\u662f\u6bd4\u8f03\u5e25\u6c23\uff1f\u300d\u539f\u672c\u62d8\u8b39\u7684\u6c23\u6c1b\uff0c\u5728\u9019\u4e9b\u5c0f\u5c0f\u4e92\u52d5\u4e2d\u6709\u4e86\u7d30\u5fae\u7684\u8b8a\u5316\u3002<\/p>\n\n\n\n

\u68b3\u626e\u597d\u4e4b\u5f8c\uff0c\u6211\u5011\u9080\u8acb\u75c5\u53cb\u79fb\u6b65\u65c1\u908a\u7684\u651d\u5f71\u68da\uff0c\u62cd\u4e0b\u4e00\u5e45\u6c99\u9f8d\u7167\u3002\u8d77\u521d\u9762\u5c0d\u93e1\u982d\u5927\u5bb6\u90fd\u6709\u4e9b\u9766\u8146\uff0c\u4f46\u96a8\u8457\u5feb\u9580\u5580\u5693\u8072\u6b64\u8d77\u5f7c\u4f0f\uff0c\u5927\u5bb6\u7d1b\u7d1b\u958b\u59cb\u5617\u8a66\u4e0d\u540c\u59ff\u52e2\u3001\u751a\u81f3\u4e3b\u52d5\u8981\u6c42\u300c\u6211\u60f3\u518d\u4f86\u4e00\u5f35\uff01\u300d\uff0c\u5e0c\u671b\u93e1\u982d\u6355\u6349\u4e0b\u9019\u4e00\u523b\u7684\u81ea\u5df1\u3002<\/p>\n\n\n\n

\"\"
\u6a21\u4eff\u52d5\u756bJojo\u7684\u89d2\u8272\u52d5\u4f5c<\/em><\/p>\n\n\n\n

\n

\u75bc\u75db\u4e4b\u5916\uff0c\u6211\u60f3\u8aaa…<\/strong><\/h2>\n<\/blockquote>\n\n\n\n

\u7b2c\u4e09\u500b\u96e3\u95dc\uff0c\u5982\u4f55\u8b93\u8d70\u9032\u4f86\u7684\u4eba\u8a8d\u8b58\u6ce1\u6ce1\u9f8d\u3002\u6211\u5011\u628a\u6d3b\u52d5\u5206\u6210\u4e09\u500b\u5834\u57df\uff1a\u300c\u751f\u547d\u5206\u4eab\u821e\u53f0\u300d\u8b93\u9bae\u6d3b\u3001\u771f\u5be6\u7684\u6545\u4e8b\u88ab\u807d\u898b\uff1b\u300c\u8cc0\u6ce2\u5e02\u96c6\u300d\u8b93\u5927\u5bb6\u900f\u904e\u597d\u5480\u56bc\u7684\u98f2\u98df\u8a8d\u8b58\u75c5\u53cb\u7684\u65e5\u5e38\uff1b\u300c\u52c7\u6c23\u6ce1\u6ce1\u4e92\u52d5\u9ad4\u9a57\u300d\u8b93\u5171\u611f\u5316\u70ba\u884c\u52d5\u3002<\/p>\n\n\n\n

\u5712\u904a\u6703\u5e02\u96c6\u53d6\u540d\u70ba\u300c\u8cc0\u6ce2\u300d\uff0c\u5c31\u662f\u7528\u53f0\u8a9e\u8aaa\u4e00\u8072\u300c\u597d\u5480\u56bc\u300d\u7684\u610f\u601d\u3002\u7576\u5929\u9032\u99d0\u6524\u8ca9\u4f9d\u6ce1\u6ce1\u9f8d\u7684\u9700\u6c42\u91cd\u65b0\u914d\u65b9\u8207\u53e3\u611f\uff0c\u8a2d\u8a08\u597d\u5480\u56bc\u3001\u5c11\u523a\u6fc0\u7684\u9910\u98f2\u7522\u54c1\u3002\u75c5\u53cb\u8207\u5bb6\u5c6c\u4e5f\u5316\u8eab\u300c\u4e00\u65e5\u6524\u4e3b\u300d\uff0c\u89aa\u624b\u6e96\u5099\u624b\u4f5c\u7de8\u7e54\u3001\u51b7\u8403\u5496\u5561\u3001\u7642\u7652\u690d\u683d\u8207\u82b1\u751f\u6625\u6372\u51b0\u6dc7\u6dcb\u7b49\u7279\u8272\u6524\u4f4d\u3002\u4e00\u5206\u4e00\u529b\u4e4b\u9593\uff0c\u81ea\u529b\u751f\u6d3b\u5728\u73fe\u5834\u9678\u7e8c\u767c\u82bd\u3002<\/p>\n\n\n\n

\n

\u539f\u4f86\u6211\u53ef\u4ee5\uff01<\/strong><\/h2>\n<\/blockquote>\n\n\n\n

\u75c5\u53cb\u5f88\u591a\u6642\u5019\u88ab\u793e\u6703\u8cbc\u4e0a\u300c\u4e0d\u80fd\u300d\u7684\u6a19\u7c64 \u2014 \u4e0d\u80fd\u4e45\u7ad9\u3001\u4e0d\u80fd\u66ec\u592a\u967d\u3001\u4e0d\u80fd\u81ea\u7531\u884c\u52d5\uff0c\u597d\u50cf\u6210\u70ba\u793e\u6703\u5305\u88b1\uff0c\u9700\u8981\u4ed6\u4eba\u5354\u52a9\u624d\u80fd\u597d\u597d\u751f\u6d3b\uff0c\u7121\u6cd5\u70ba\u4e16\u754c\u8ca2\u737b\u50f9\u503c\u3002\u4f46\u5176\u5be6\uff0c\u4ed6\u5011\u53ea\u662f\u9084\u6c92\u88ab\u770b\u898b\u3002\u4ed6\u5011\u80fd\u505a\u5f88\u591a\u4e8b\uff0c\u61c2\u5f97\u7167\u9867\u4ed6\u4eba\u3001\u80fd\u50be\u807d\u3001\u80fd\u5206\u4eab\u9762\u5c0d\u751f\u547d\u6311\u6230\u7684\u52c7\u6c23\u3002\u53ea\u662f\u793e\u6703\u6709\u6642\u5fd8\u4e86\uff0c\u9019\u4e9b\u884c\u52d5\u672c\u8eab\u7684\u6eab\u67d4\uff0c\u5c31\u662f\u73cd\u8cb4\u7684\u8ca2\u737b\u3002

\u6d3b\u52d5\u96c6\u9ede\u7403\u4e2d\uff0c\u4e5f\u85cf\u8457\u985e\u4f3c\u7684\u6982\u5ff5\u3002\u900f\u904e\u8f49\u63db\u75c5\u53cb\u7684\u9ad4\u611f\u6210\u95d6\u95dc\u904a\u6232\uff0c\u8d70\u5929\u5802\u8def\u3001\u6234\u8b8a\u8272\u773c\u93e1\u3001\u76ae\u819a\u5f69\u7e6a\u7b49\u95dc\u5361\uff0c\u9ad4\u9a57\u75c5\u53cb\u65e5\u5e38\u5f8c\uff0c\u8490\u96c6\u90a3\u4e9b\u5225\u4eba\u773c\u4e2d\u6c92\u6709\u7528\u8655\u7684\u4fe1\u7269\uff0c\u5b83\u5011\u4ea6\u53ea\u662f\u7b49\u5f85\u88ab\u770b\u898b\u3002\u7576\u5b83\u5011\u88ab\u91cd\u65b0\u767c\u73fe\uff0c\u5c31\u80fd\u7dbb\u653e\u65b0\u7684\u50f9\u503c\u8207\u6a23\u8c8c\u3002<\/p>\n\n\n\n

\"\"
\u518d\u5229\u7528\u5ee2\u6599\u4f5c\u70ba\u95d6\u95dc\u96c6\u9ede\u54c1<\/em><\/p>\n\n\n\n

\u6d3b\u52d5\u672c\u6b21\u7684\u6350\u6b3e\u79ae\u8d08\u54c1\u300a\u6211\u5011\u4e00\u8d77\uff0c\u6162\u6162\u756b\u51fa\u529b\u91cf\u300b\u5171\u5275\u6d77\u5831\u8a8c\uff0c\u9080\u8acb\u56db\u4f4d\u75c5\u53cb\u89aa\u81ea\u70ba\u5716\u7a3f\u4e0a\u8272\u3002\u5c0d\u4ed6\u5011\u4f86\u8aaa\uff0c\u62ff\u8d77\u756b\u7b46\u4e26\u4e0d\u5bb9\u6613\uff0c\u4f46\u6bcf\u4e00\u7b46\u90fd\u860a\u542b\u7740\u5c0d\u751f\u547d\u7684\u52c7\u6c23\uff0c\u4ea6\u662f\u56de\u61c9\u7d66\u6350\u6b3e\u8005\u7684\u5fc3\u610f\u3002\u5716\u7a3f\u4e2d\u7684\u82b1\u6735\u8c61\u5fb5\u966a\u4f34\u4ed6\u5011\u7684\u6bcf\u4e00\u4efd\u529b\u91cf \u2014 \u5bb6\u5c6c\u3001\u91ab\u8b77\u3001\u5354\u6703\u8207\u5404\u4f4d\u6350\u6b3e\u8005\u5011\u3002<\/p>\n\n\n\n

\u6ce1\u6ce1\u9f8d\u6d3b\u52d5\u7d00\u9304\u5f71\u7247\uff1ahttps:\/\/youtu.be\/qWrLPaOpano<\/a><\/p>\n\n\n\n

<\/p>\n\n\n\n

\n

\u6211\u5011\u662f\u5357\u7121\u5357\u6f2b<\/strong><\/h2>\n<\/blockquote>\n\n\n\n

\u300c\u5357\u7121\u5357\u6f2bhome\u300d\u7531\u4e00\u884c\u5341\u4eba\u7684\u81ea\u7531\u5de5\u4f5c\u8005\u7d44\u6210\uff0c\u5e0c\u671b\u51dd\u805a\u4e00\u80a1\u529b\u91cf\uff0c\u662f\u6562\u65bc\u653e\u4e0b\u65e2\u6709\u4eba\u751f\u9053\u8def\uff0c\u8df3\u51fa\u4f86\u6b63\u8996\u5167\u5fc3\u6700\u60f3\u8981\u7684\uff0c\u662f\u751a\u9ebc\u6a23\u672a\u4f86\u3002\u81ea\u6211\u63a2\u7d22\u7684\u540c\u6642\uff0c\u9762\u5c0d\u4e0d\u77e5\u9053\u8981\u71d2\u8001\u672c\u71d2\u5230\u4ec0\u9ebc\u6642\u5019\u7684\u672a\u77e5\uff0c\u4e5f\u6703\u5e38\u5e38\u8cea\u7591\u81ea\u5df1\uff1a\u300c\u73fe\u5728\u6211\u662f\u4e0d\u662f\u5f88\u5ee2\uff1f\u300d<\/p>\n\n\n\n

\u6211\u5011\u85c9\u7740\u4e00\u6b21\u6b21\u7684\u793e\u6703\u884c\u52d5\u4e2d\uff0c\u6211\u5011\u66f4\u80fd\u9ad4\u6703\u5230\uff1a\u5176\u5be6\u6bcf\u500b\u4eba\u4e5f\u4e00\u6a23\uff0c\u72c0\u614b\u90fd\u5728\u8b8a\u5316\u3002\u4e5f\u8a31\u6703\u6709\u8106\u5f31\u3001\u53d7\u50b7\u3001\u88ab\u8aa4\u89e3\u7684\u6642\u5019\uff0c\u4f46\u90a3\u4e26\u4e0d\u4ee3\u8868\u5931\u53bb\u50f9\u503c\uff0c\u800c\u662f\u751f\u547d\u6b63\u5728\u8f49\u63db\u5f62\u72c0\u3002<\/p>\n\n\n\n

\"\"
\u300c\u5357\u7121\u5357\u6f2bhome\u300d\u5718\u968a\u5408\u7167<\/em><\/p>\n\n\n\n

\u6211\u5011\u60f3\u50b3\u905e\u4e00\u500b\u4fe1\u5ff5\u662f\uff1a\u7576\u88ab\u770b\u898b\u3001\u88ab\u7406\u89e3\u3001\u88ab\u91cd\u65b0\u8ce6\u4e88\u610f\u7fa9\uff0c\u6bcf\u4e00\u4efd\u5b58\u5728\u90fd\u80fd\u91cd\u65b0\u767c\u5149\uff0c\u7e7c\u7e8c\u51dd\u805a\u751f\u547d\u7684\u9023\u7d50\uff0c\u5275\u9020\u751f\u6a5f\u3002\u5982\u679c\u4f60\u5167\u5fc3\u4e5f\u6709\u60f3\u5be6\u73fe\u7684\u7406\u5ff5\uff0c\u537b\u4e0d\u77e5\u9053\u4f55\u8655\u5165\u624b\uff0c\u6b61\u8fce\u4f86\u81e8\u4f4d\u65bc\u53f0\u5357\u5317\u5340\u7684\u57fa\u5730\uff0c\u6253\u958b\u81ea\u6211\u7684\u591a\u5143\u5b87\u5b99\uff01
<\/p>\n\n\n\n

\n

Beyond Pain: Front and Backstage of EB Fair<\/strong><\/h1>\n<\/blockquote>\n\n\n\n

Hereditary Epidermolysis Bullosa (EB)<\/strong> is a rare genetic skin disorder. Due to defects in the genes that bind epidermis to dermis, parents\u2019 skin is extraordinarily fragile. Even the slightest friction or impact can cause blistering and open wounds. These injuries are not limited to the skin\u2019s surface, it may extend into one\u2019s mouth, esophagus, and gastrointestinal liningturning. Turning eating, walking, and daily wound care into persistent sources of pain.
<\/p>\n\n\n\n

Pain exists not only in the illness itself, but also in the way the outside world looks at them.\u200b The affected areas are repeatedly injured, visible symptoms such as limb contractures and smelling wounds emerge, forcing patients to face a great deal of uneasy stares while growing up.\u200bThese looks are not always malicious, sometimes they simply come from not being familiar with them, and how to start a conversation.\u200b Over time, it becomes harder for patients to initiate dialogue, and they gradually withdraw from social life. The less they express, the further away real understanding drifts.
<\/p>\n\n\n\n

\n
\n

Stairs before stepping on stage<\/h2>\n<\/blockquote>\n<\/blockquote>\n\n\n\n

TThis fair is a sharing of courage, trust, and love. The EB Patient Association organized a series of self awareness and verbal training activities. Accompanying patients as they practiced sharing their life stories, learning to recognize the emotions behind their thoughts.<\/p>\n\n\n\n

Hosting a rare disease charity event requires immersing oneself in the perspectives of patients, families, donors, and medical experts to grasp each stakeholder’s mindset and fully convey their beliefs to the issue. In less than 1month preparation before taking the stage, tension skyrocketed. Everyday felt like an all-nighter, as the team overcame hurdle after hurdle.<\/p>\n\n\n\n

The first hurdle was building trust. When we first joined the weekly online gatherings on Saturdays, there were over a dozen participants, but only we and the executive director had our cameras on. At that moment, we sensed deep in our hearts that for patients, trusting new faces is no easy feat, even turning on the camera comes with hesitation.\u00a0<\/p>\n\n\n\n

To help everyone understand that we weren’t a traditional PR firm, we decided to step in front of the cameras one by one, introducing each team member and sharing why we wanted to pour our hearts into this event.<\/p>\n\n\n\n

Thus, throughout the weekends of September and October, we listened to the patients’ rehearsals while chatting about our recent feelings, gradually weaving a relationship bond drop by drop. In addition to regularly attending gatherings, we also arranged in-person interviews.<\/p>\n\n\n\n

After these face-to-face interactions, my thoughts about EB patients began to shift. In the past, media portrayals often paired their appearances with upset music and narratives of pity, depicting them in a relatively vulnerable state. Yet, in real interactions, what emerged in actions and words was simply a group of utterly natural individuals. Each with distinct personalities. They don’t need excessive sympathy. They just want to be treated equally, seen for their brilliance like anyone else, and accepted in their vulnerabilities.<\/p>\n\n\n\n

\n

Let\u2019s Be A Star<\/h2>\n<\/blockquote>\n\n\n\n

The second hurdle was physical limitations. Due to pain, most patients rely on wheelchairs for mobility and must avoid prolonged sun exposure. Delivering a speech at an outdoor venue poses a massive challenge for them. Enduring sweat seeping into wounds, while bearing the pressure of baring their souls under the gaze of crowds.<\/p>\n\n\n\n


\"\"
Salon photographing before going on stage<\/em><\/p>\n\n\n\n

Fearing wound seepage staining clothes or rough fabrics chafing skin, patients typically choose dark colors or soft cotton. But as the stars of the event, they deserved to shine brightly! So, during the rehearsal the day before, we invited a stylist to design personalized looks based on each person’s personality, delivering them to the hotel as a little surprise for tomorrow’s event. One patient lit up at the sight of the vibrant “polkadot outfit” and exclaimed with joy, “I’ll wear this one on stage tomorrow!”
<\/p>\n\n\n\n

On the event day, patients and families arrived at the preparation room one after another, their faces unable to hide the feeling of nervousness. While the stylist arranged hairstyles, they invited patients to pick accessories for themselves as a final gift before going onstage. “Does this make me look more handsome?” one of the patients asked.<\/p>\n\n\n\n

Once dressed and groomed, patients were invited to the photo studio for portrait shots. At first, everyone was shy in front of the camera, but as shutter clicks echoed continuously, they began trying with different poses. “I want one more!”,hoping the lens would capture this moment of themselves.<\/p>\n\n\n\n

\"\"
Imitating the character poses from the anime JoJo’s Bizarre Adventure<\/strong><\/em><\/p>\n\n\n\n

\n

Beyond pain, I wanna say\u2026\u2026<\/strong><\/h2>\n<\/blockquote>\n\n\n\n


The third hurdle was how to help visitors get familiar with EB patients. We divided the event into three zones: the “Life-Sharing Stage” to let vivid, authentic stories be heard. “Hebo Bazaar” to introduce patients’ daily lives through easy-to-chew foods; and the “Courage Bubble Experience” to turn empathy into action.<\/p>\n\n\n\n

The fair’s market was named “Hebo”\u2014the Taiwanese phrase for “good to chew.” Vendors on the day reformulated recipes and textures to meet EB patients needs, creating easy-to-chew, low-irritation food products. Patients and families personally preparing food and drinks at booths. <\/p>\n\n\n\n

\u539f\u4f86\u6211\u53ef\u4ee5\uff01<\/strong>
<\/strong>I can do it!<\/strong><\/p>\n\n\n\n

Patients are often labeled by society with “can\u2019ts”. Can’t stand for long, can’t be in the sun, can’t move freely, as if they become a burden, needing help from others to live well and unable to contribute value to the world. But in reality, they just haven’t been seen yet. They can do many things: care for others, listen attentively, and share the courage to face life’s challenges. Society sometimes forgets that the gentleness of these actions themselves is a precious contribution.<\/p>\n\n\n\n

The event’s stamp rally hides a similar concept. By turning patients’ bodily experiences into adventure game checkpoints. Participants experience daily life as a patient and collect tokens deemed useless by others’ eyes. These, too, just await being seen. Once rediscovered, they bloom with new values and forms.<\/p>\n\n\n\n

\"\"
Using recycled waste materials as checkpoint tokens<\/em><\/p>\n\n\n\n

Our donation thank-you gift, We Together, Draw Out Strength,<\/em> is a co-created poster zine. Inviting four patients to personally color artworks. For them, picking up a paintbrush isn’t easy, but every stroke embodies courage toward life and serves as a heartfelt response to donors. The flowers in the artwork symbolize the forces accompanying them, the family, medical staff, the association, and all deer donors.<\/p>\n\n\n\n

Our Event Clip:https:\/\/youtu.be\/qWrLPaOpano<\/a><\/p>\n\n\n\n

\n

We are Namo Collective<\/strong><\/h2>\n<\/blockquote>\n\n\n\n

Namo Collective consists of ten freelancers, hoping to gather a force. Those daring to set aside their established life paths, step out, and confront what future their hearts truly desire. While exploring themselves, they face the unknown of how long they’ll burn through their savings, often questioning: “Am I totally useless right now?”<\/p>\n\n\n\n

Through these repeated social actions, we realize more deeply. Actually, everyone is the same, with states constantly shifting. There may be times of vulnerability, injury, or misunderstanding, but that doesn’t mean losing value. It’s just life transforming its shape.<\/p>\n\n\n\n

\"\"
Namo Collective Group photo<\/em><\/p>\n\n\n\n

We aim to convey a belief: when seen, understood, and re-endowed with meaning, every existence can shine anew, continuing to forge life’s connections and create vitality. If you harbor an ideal you long to realize but don’t know where to begin, you’re welcome to visit our base in Tainan City’s North District and unlock your own multiverse!
<\/p>\n\n\n\n


<\/p>\n\n\n\n


<\/p>","protected":false},"excerpt":{"rendered":"

Beyond Pain: Front and Backstage of EB Fair \u64b0\u6587\u2571\u5433\u6d69\u8ce2@\u5357\u7121\u5357\u6f2b […]<\/p>\n","protected":false},"author":3,"featured_media":1033,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_gspb_post_css":"","footnotes":""},"categories":[1],"tags":[],"class_list":["post-1032","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news"],"blocksy_meta":[],"acf":[],"_links":{"self":[{"href":"https:\/\/om-mine.com\/en\/wp-json\/wp\/v2\/posts\/1032","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/om-mine.com\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/om-mine.com\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/om-mine.com\/en\/wp-json\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/om-mine.com\/en\/wp-json\/wp\/v2\/comments?post=1032"}],"version-history":[{"count":0,"href":"https:\/\/om-mine.com\/en\/wp-json\/wp\/v2\/posts\/1032\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/om-mine.com\/en\/wp-json\/wp\/v2\/media\/1033"}],"wp:attachment":[{"href":"https:\/\/om-mine.com\/en\/wp-json\/wp\/v2\/media?parent=1032"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/om-mine.com\/en\/wp-json\/wp\/v2\/categories?post=1032"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/om-mine.com\/en\/wp-json\/wp\/v2\/tags?post=1032"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}