{"id":3088,"date":"2019-11-03T17:49:29","date_gmt":"2019-11-03T23:49:29","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3088"},"modified":"2019-11-03T17:49:29","modified_gmt":"2019-11-03T23:49:29","slug":"individual-with-lgmd-rosamund","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/zh\/individuals-with-lgmd-interviews\/2019\/11\/03\/individual-with-lgmd-rosamund\/","title":{"rendered":"\u60a3\u6709 LGMD \u7684\u4e2a\u4eba\uff1a Rosamund"},"content":{"rendered":"
\"\"<\/figure><\/div>\n\n\n\n

LGMD \"\u7126\u70b9\u8bbf\u8c08\"<\/strong><\/p>\n\n\n\n

\u540d\u79f0<\/strong>: \u7f57\u65af\u5b5f\u5fb7  \u5e74\u9f84<\/strong>:43 \u5c81<\/p>\n\n\n\n

\u56fd\u5bb6<\/strong>:\u82f1\u56fd<\/p>\n\n\n\n

LGMD \u5b50\u7c7b\u578b<\/strong>:\u4e0d\u77e5\u9053\n\u672a\u77e5\uff1b\u6211\u4ecd\u5728\u63a5\u53d7\u82f1\u56fd\u7ebd\u5361\u65af\u5c14\u7ea6\u7ff0-\u6c83\u5c14\u987f\u808c\u8089\n\u82f1\u56fd\u7ebd\u5361\u65af\u5c14\u7684\u7ea6\u7ff0-\u6c83\u5c14\u987f\u808c\u8089\u840e\u7f29\u75c7\u7814\u7a76\u4e2d\u5fc3\u8fdb\u884c\u6d4b\u8bd5\u3002<\/p>\n\n\n\n

\u60a8\u5728\u51e0\u5c81\u65f6\u88ab\u786e\u8bca<\/strong>:\n2017 \u5e74 2 \u6708\u901a\u8fc7\u5de5\u4f5c\u4f53\u68c0\u540e\uff0c\u533b\u751f\u5bf9\u6211\u7684\n\u6211\u7684\u808c\u8089\u529f\u80fd\u30022018 \u5e74 1 \u6708\uff0c\u5728\u4f26\u6566\u652f\u4ed8\u4e86\u79c1\u4eba\u795e\u7ecf\u79d1\u533b\u751f\u7684\u8d39\u7528\u540e\uff0c\u533b\u751f\u8ba4\u4e3a\u8fd9\u662f\u4e00\u79cd\u808c\u8089\u840e\u7f29\u75c7\u3002\n2018 \u5e74 1 \u6708\uff0c\u6211\u4ed8\u8d39\u53bb\u4f26\u6566\u770b\u4e86\u4e00\u4f4d\u795e\u7ecf\u79d1\u533b\u751f\u3002<\/p>\n\n\n\n

\u60a8\u6700\u521d\u7684\u75c7\u72b6\u662f\u4ec0\u4e48\uff1f<\/strong>:<\/p>\n\n\n\n

\u4ece\u6211\u8bb0\u4e8b\u8d77\uff0c\u6211\u7684\u4e0b\u80cc\u90e8\u5c31\u4e00\u76f4\u75bc\u75db\u300220 \u5c81\u51fa\u5934\u7684\u65f6\u5019\uff0c\u6211\u5728\u8df3\u9a6c\u8868\u6f14\u65f6\u80cc\u90e8\u9aa8\u6298\uff08\u8170\u690e 4 \u53f7\u9aa8\u6298\uff09\uff0c\u5de6\u9acb\u5173\u8282\u75bc\u75db\u96be\u5fcd\uff0c\u8170\u75db\u548c\u819d\u5173\u8282\u75bc\u75db\u52a0\u5267\u3002\u6211\u5076\u5c14\u4f1a\u65e0\u7f18\u65e0\u6545\u5730\u7eca\u5012\u548c\u6454\u5012\u3002\u9664\u4e86\u4e00\u4f4d\u9acb\u5173\u8282\u4e13\u5bb6\u5916\uff0c\u6211\u770b\u7684\u6240\u6709\u4e13\u79d1\u533b\u751f\u90fd\u5c06\u8fd9\u4e9b\u75c7\u72b6\u5f52\u548e\u4e8e\u6211\u7684\u80cc\u90e8\u9aa8\u6298\u3002\u6211\u7684\u8158\u7ef3\u808c\u3001\u5185\u6536\u808c\u548c\u80a1\u56db\u5934\u808c\u51e0\u4e4e\u5b8c\u5168\u5931\u7075\u3002\u7406\u7597\u56e2\u961f\u8ba9\u5b83\u4eec\u91cd\u65b0\u5f00\u59cb\u5de5\u4f5c\uff0c\u4f46\u65e0\u8bba\u6211\u5982\u4f55\u52aa\u529b\uff0c\u6211\u4eec\u90fd\u65e0\u6cd5\u589e\u5f3a\u5b83\u4eec\u7684\u529b\u91cf\u3002\u5c31\u5728\u8fd9\u65f6\uff0c\u533b\u751f\u5efa\u8bae\u6211\u53bb\u770b\u795e\u7ecf\u79d1\u533b\u751f\u3002<\/p>\n\n\n\n

\u60a8\u662f\u5426\u6709\u5176\u4ed6\u5bb6\u5ead\u6210\u5458\u60a3\u6709 LGMD\uff1a<\/strong><\/p>\n\n\n\n

\u672a\u786e\u8bca\u3002\u6211\u7684\u59d0\u59d0\u60a3\u6709\u975e\u5e38\u8f7b\u5fae\u7684\n\u624b\u81c2\u65e0\u529b\u3002 <\/p>\n\n\n\n

\u60a8\u8ba4\u4e3a\u5728\u4e0e LGMD\n\u6700\u5927\u7684\u6311\u6218\u662f\u4ec0\u4e48\uff1f<\/strong><\/p>\n\n\n\n

\u6211\u4e00\u76f4\u975e\u5e38\u6d3b\u8dc3\uff0c\u559c\u6b22\u5fd9\u788c\u3002\u6211\u4ee5\u524d\n\u4e3a\u4e86\u5230\u8fbe\u67d0\u4e2a\u5730\u65b9\uff0c\u6211\u603b\u662f\u4e0d\u8f9e\u8f9b\u82e6\u3002<\/p>\n\n\n\n

\u6700\u5927\u7684\u6311\u6218\u662f\u65e0\u6cd5\u5feb\u901f\u79fb\u52a8\u3001\n\u722c\u697c\u68af\u548c\u5306\u5fd9\u5954\u6ce2\u3002<\/p>\n\n\n\n

\u5982\u679c\u6211\u5728\u4e0a\u4e0b\u73ed\u9014\u4e2d\u9700\u8981\u8ddf\u4e0a\u4eba\u7fa4\u3001\n\u6211\u5fc5\u987b\u4f7f\u7528\u624b\u6756\uff0c\u8fd9\u9700\u8981\u4e00\u4e9b\u65f6\u95f4\u6765\u9002\u5e94\u3002\n\u4e60\u60ef\u3002\u8001\u5b9e\u8bf4\uff0c\u6211\u771f\u7684\u5f88\u8ba8\u538c\u5b83\u3002<\/p>\n\n\n\n

\u60a8\u6700\u5927\u7684\u6210\u5c31\u662f\u4ec0\u4e48\uff1f<\/strong>:<\/p>\n\n\n\n

\u6211\u4ece\u5c0f\u5c31\u70ed\u8877\u4e8e\u4f53\u9a8c\u548c\u4eab\u53d7\u751f\u6d3b\u3002\n\u6211\u7684\u751f\u6d3b\u3002\u6211\u65c5\u884c\u8fc7\uff0c\u5728\u4e4c\u5e72\u8fbe\u4e3a\u4e00\u5bb6\u6148\u5584\u673a\u6784\u5de5\u4f5c\u8fc7\uff0c\u53c2\u52a0\u8fc7\u5f88\u591a\u4f53\u80b2\u6d3b\u52a8\n\u5e76\u4e3a\u4f26\u6566\u5965\u6797\u5339\u514b\u4ea4\u4ed8\u5c40\u5de5\u4f5c\uff0c\u5efa\u9020 2012 \u5e74\u5965\u8fd0\u4f1a\u573a\u9986\u3002\n\u573a\u9986\u3002\u6211\u4ece\u4e8b\u804c\u4e1a\u5065\u5eb7\u4e0e\u5b89\u5168\u65b9\u9762\u7684\u5de5\u4f5c\uff0c\u5728\u5965\u6797\u5339\u514b\u8fd0\u52a8\u4e2d\u5de5\u4f5c\u7684\u65f6\u5149\u662f\u6700\u7f8e\u597d\u7684\u3002\n\u6211\u5728\u5965\u6797\u5339\u514b\u8fd0\u52a8\u4e2d\u7684\u65f6\u5149\u662f\u6700\u7f8e\u597d\u7684\u3002\n\u6211\u5f88\u5e86\u5e78\u81ea\u5df1\u5f53\u65f6\u6709\u7cbe\u529b\u548c\u80fd\u529b\u5b8c\u6210\u901a\u52e4\u4efb\u52a1\u5e76\u5145\u5206\u53c2\u4e0e\u5176\u4e2d\u3002\u975e\u6d32\u662f\u4e00\u6b21\u96be\u5fd8\u7684\u7ecf\u5386\u3002\n\u6211\u8ba4\u4e3a\u73b0\u5728\u7684\u6211\u65e0\u6cd5\u505a\u5230\u8fd9\u4e00\u70b9\uff0c\u6240\u4ee5\u6211\u6700\u5927\u7684\u6210\u5c31\u662f\n\u56e0\u6b64\uff0c\u6211\u6700\u5927\u7684\u6210\u5c31\u5c31\u662f\u7ee7\u7eed\u6211\u7684\u751f\u6d3b\uff0c\u521b\u9020\u548c\u628a\u63e1\u673a\u4f1a\u3002\u6211\u76ee\u524d\u6b63\u5728\u82f1\u56fd\u7684\u4e00\u4e2a\n\u6211\u559c\u6b22\u5927\u578b\u9879\u76ee\uff0c\u6240\u4ee5\u8fd8\u80fd\u7ee7\u7eed\u505a\u8fd9\u4e9b\u5de5\u4f5c\uff0c\u8fd8\u80fd\u7ee7\u7eed\u9a91\u9a6c\uff08\u9a91\u9a6c\u662f\u6211\u7684\u7231\u597d\uff09\u3002\n\u6211\u559c\u6b22\u5927\u578b\u9879\u76ee\uff0c\u6240\u4ee5\u73b0\u5728\u8fd8\u80fd\u4ece\u4e8b\u8fd9\u9879\u5de5\u4f5c\uff0c\u8fd8\u80fd\u9a91\u9a6c\uff08\u7b97\u662f\u5427\uff01\uff09\uff0c\u8fd9\u4e9b\u90fd\u662f\u6211\u7684\u6210\u5c31\u3002<\/p>\n\n\n\n

LGMD \u662f\u5982\u4f55\u5f71\u54cd\u4f60\u6210\u4e3a\u4eca\u5929\u7684\n\u6210\u4e3a\u4eca\u5929\u7684\u4f60\uff1a<\/strong><\/p>\n\n\n\n

\u6211\u4ecd\u5728\u7ee7\u7eed\u6211\u7684\u751f\u6d3b\uff0c\u521b\u9020\u673a\u4f1a\n\u4f46\u73b0\u5728\u4e0d\u540c\u4e86\u3002\u6211\u66fe\u7ecf\u65e0\u6240\u754f\u60e7\uff0c\u4f46\u7531\u4e8e\u884c\u52a8\u4e0d\u4fbf\n\u884c\u52a8\u4e0d\u4fbf\u3001\u65f6\u5e38\u7ad9\u4e0d\u7a33\u548c\u75b2\u60eb\u4f1a\u5f71\u54cd\u81ea\u4fe1\u5fc3\u3002\u8fd9\n\u8fd9\u8ba9\u6211\u5f88\u96be\u63a5\u53d7\u3002\u5f53\u6211\u88ab\u544a\u77e5\u8fd9\u53ef\u80fd\u662f\u808c\u8089\n\u808c\u8089\u840e\u7f29\u75c7\u65f6\uff0c\u6211\u79c1\u4e0b\u91cc\u6bcf\u5929\u90fd\u54ed\uff0c\u6574\u6574\u54ed\u4e86\u516d\u4e2a\u6708\u3002\u4e92\u8054\u7f51\n\u4f46\u4e5f\u53ef\u80fd\u9020\u6210\u4f24\u5bb3\u3002\u6211\u53ef\u80fd\u4f1a\u50cf\u73b0\u5728\u8fd9\u6837\uff0c\u75c5\u60c5\u7a0d\u6709\u6076\u5316\n\u5982\u679c\u6211\u63a5\u53d7\u6211\u5728\u7f51\u4e0a\u8bfb\u5230\u7684\u6240\u6709\u4e1c\u897f\n\u5728\u7f51\u4e0a\u8bfb\u5230\u7684\u4e1c\u897f\u3002\u6211\u6ca1\u6709\u544a\u8bc9\u4efb\u4f55\u4eba\uff1b\u6211\u4e0d\u77e5\u9053\u8be5\u8bf4\u4ec0\u4e48\uff0c\u4e5f\u4e0d\u77e5\u9053\u5982\u4f55\u89e3\u91ca\u3002\n\u89e3\u91ca\u3002\u6211\u5bb3\u6015\u4f1a\u5931\u53bb\u6211\u7684\u4e08\u592b\u548c\u5de5\u4f5c\u3002\u8c01\u4f1a\u60f3\u8981\n\u5c24\u5176\u662f\u5728\u5efa\u7b51\u884c\u4e1a\uff1f\n\u6211\u9762\u4e34\u7740\u6211\u65e0\u6cd5\u63a7\u5236\u7684\u53d8\u5316\uff0c\u6211\u611f\u5230\u88ab\u56f0\u548c\u8106\u5f31\u3002<\/p>\n\n\n\n

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\u60a8\u5e0c\u671b\u4e16\u754c\u4e86\u89e3 LGMD \u7684\u54ea\u4e9b\u65b9\u9762\uff1f<\/strong>:<\/p>\n\n\n\n

\u6211\u5f00\u73a9\u7b11\u5730\u8bf4\u8fd9\u662f\u4e00\u79cd\u4e0d\u65b9\u4fbf\u7684\u72b6\u51b5\uff0c\u610f\u5473\u7740\u6211\u5fc5\u987b\u5c11\u5403\u70b9\uff0c\u9519\u8fc7\u591a\u5403\u4e00\u5757\u86cb\u7cd5\u7684\u673a\u4f1a\u3002\n\u8fd9\u610f\u5473\u7740\u6211\u5fc5\u987b\u5c11\u5403\u70b9\uff0c\u9519\u8fc7\u591a\u5403\u4e00\u5757\u86cb\u7cd5\u7684\u673a\u4f1a\u3002\u8ba4\u771f\u5730\u8bf4\n\u5927\u8111\u5f88\u795e\u5947\uff0c\u4f46\u4e5f\u5f88\u6b8b\u9177\u3002\u6211\u6709\u65f6\u4f1a\u83ab\u540d\u5176\u5999\u5730\n\u6211\u6709\u65f6\u4f1a\u5fd8\u4e86\u81ea\u5df1\u6709\u8fd9\u79cd\u75c5\uff0c\u60f3\u52a8\u4e00\u4e0b\u5374\u53c8\u7f29\u6210\u4e00\u56e2\u3002\u4e0d\u5f97\u4e0d\u8003\u8651\n\u8981\u8003\u8651\u5982\u4f55\u884c\u8d70\u548c\u79fb\u52a8\uff0c\u8fd9\u8ba9\u4eba\u7b4b\u75b2\u529b\u5c3d\u3002\u5e78\u8fd0\u7684\u662f\n\u81ea\u7136\u80fd\u91cf\uff0c\u8ba9\u6211\u5ea6\u8fc7\u4e86\u5927\u591a\u6570\u65e5\u5b50\u3002<\/p>\n\n\n\n

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