{"id":3464,"date":"2020-08-24T19:35:11","date_gmt":"2020-08-25T00:35:11","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3464"},"modified":"2024-02-09T14:24:34","modified_gmt":"2024-02-09T14:24:34","slug":"dylan","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/zh\/individuals-with-lgmd-interviews\/2020\/08\/24\/dylan\/","title":{"rendered":"\u60a3\u6709 LGMD \u7684\u4e2a\u4eba\uff1a \u8fea\u4f26"},"content":{"rendered":"
\"\"<\/figure><\/div>\n\n\n\n

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

\u540d\u79f0<\/strong>: \u8fea\u4f26                                  \u5e74\u9f84<\/strong>: 28 \u5c81<\/p>\n\n\n\n

\u56fd\u5bb6<\/strong>: \u7f8e\u56fd<\/p>\n\n\n\n

LGMD \u5b50\u7c7b\u578b<\/strong>: LGMD 2J \/ R10 Titin \u76f8\u5173<\/p>\n\n\n\n

\u60a8\u5728\u51e0\u5c81\u65f6\u88ab\u786e\u8bca<\/strong>: <\/p>\n\n\n\n

\u6211\u5728 23 \u5c81\u65f6\u88ab\u786e\u8bca\u3002<\/p>\n\n\n\n

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

\u6211\u5f00\u59cb\u6ce8\u610f\u5230 \"\u6b63\u5e38 \"\u7684\u4e8b\u60c5\u5bf9\u6211\u6765\u8bf4\u53d8\u5f97\u8d8a\u6765\u8d8a\u56f0\u96be--\u4e0a\u697c\u68af\u3001\u5750\u5728\u5730\u4e0a\u540e\u7ad9\u8d77\u6765\u3001\u8df3\u8dc3\u548c\u4e0b\u8e72\u3002\u6211\u7ecf\u5e38\u808c\u8089\u75b2\u52b3\uff0c\u8fd8\u4f1a\u4e0d\u5c0f\u5fc3\u6454\u5012\u3002\u5f53\u6211\u5931\u53bb\u4e86\u8dd1\u6b65\u7684\u80fd\u529b\uff0c\u6454\u5012\u7684\u6b21\u6570\u4e5f\u8d8a\u6765\u8d8a\u9891\u7e41\u4e4b\u540e\uff0c\u6211\u4eec\u5c31\u77e5\u9053\u4e8b\u60c5\u4e0d\u5bf9\u52b2\u4e86\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

\u4e0d\u6211\u662f\u72ec\u4e00\u65e0\u4e8c\u7684\uff01<\/p>\n\n\n\n

\u60a8\u8ba4\u4e3a LGMD \u60a3\u8005\u5728\u751f\u6d3b\u4e2d\u9762\u4e34\u7684\u6700\u5927\u6311\u6218\u662f\u4ec0\u4e48\uff1f<\/strong>:<\/p>\n\n\n\n

\u8fd9\u662f\u4e00\u79cd\u6b8b\u9177\u7684\u75be\u75c5\uff0c\u56e0\u4e3a\u5b83\u4e0d\u4ec5\u81ea\u7136\u800c\u7136\u5730\u593a\u8d70\u6211\u4eec\u7684\u529b\u91cf\u548c\u884c\u52a8\u80fd\u529b\uff0c\u8fd8\u8bd5\u56fe\u593a\u8d70\u6211\u4eec\u7684\u5e0c\u671b\u548c\u5bf9\u81ea\u5df1\u751f\u6d3b\u7684\u63a7\u5236\u3002\u5f53\u6211\u4eec\u7684\u8eab\u4f53\u6bcf\u5929\u90fd\u5728\u6076\u5316\uff0c\u5374\u770b\u4e0d\u5230\u4efb\u4f55\u6cbb\u7597\u6216\u6cbb\u6108\u7684\u65b9\u6cd5\u65f6\uff0c\u6211\u4eec\u5f88\u5bb9\u6613\u611f\u5230\u5931\u8d25\u548c\u88ab\u5ffd\u89c6\u3002\u6211\u8ba4\u4e3a\u8fd9\u662f\u5b83\u6700\u5927\u7684\u6311\u6218\u4e4b\u4e00--\u8ba9\u6211\u4eec\u4fdd\u6301\u6e05\u9192\u3002\u8fd9\u5c31\u662f\u4e3a\u4ec0\u4e48\u4fdd\u6301\u4e50\u89c2\u548c\u5c3d\u6700\u5927\u52aa\u529b\u751f\u6d3b\u662f\u5982\u6b64\u91cd\u8981\uff0c\u65e0\u8bba\u8fd9\u770b\u8d77\u6765\u50cf\u4ec0\u4e48\uff01<\/p>\n\n\n\n

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

\u6211\u975e\u5e38\u5e78\u8fd0\uff0c\u80fd\u591f\u4e0e\u4e16\u754c\u4e0a\u6700\u68d2\u7684\u4eba\u4e00\u8d77\u5728\u5168\u56fd\u5404\u5730\uff0844 \u4e2a\u5dde\uff09\u6f14\u594f\u97f3\u4e50\u3002\u6211\u4e0d\u77e5\u9053\u81ea\u5df1\u8fd8\u80fd\u8fd9\u6837\u505a\u591a\u4e45\uff0c\u4f46\u8fd9\u5df2\u7ecf\u8ba9\u6211\u68a6\u60f3\u6210\u771f\u3002\u6211\u4e5f\u662f\u5fb7\u514b\u8428\u65af\u57fa\u7763\u6559\u5927\u5b66\u7684\u6bd5\u4e1a\u751f\uff08\u9752\u86d9\u961f\u52a0\u6cb9\uff09\uff0c\u6211\u8fd8\u662f\u4e2a\u5b69\u5b50\u7684\u65f6\u5019\u5c31\u662f\u5dde\u56fd\u9645\u8c61\u68cb\u51a0\u519b\u3002\u6211\u8fd8\u8ba4\u4e3a\u81ea\u5df1\u662f\u4e2a\u76f8\u5f53\u4e0d\u9519\u7684\u72d7\u7238\u7238\uff01<\/p>\n\n\n\n

LGMD \u662f\u5982\u4f55\u5f71\u54cd\u60a8\u6210\u4e3a\u4eca\u5929\u7684\u81ea\u5df1\u7684\uff1f<\/strong><\/p>\n\n\n\n

\u5b83\u6bcf\u5929\u90fd\u6559\u4f1a\u6211\u65b0\u7684\u4e1c\u897f\u3002\u5728\u8fd9\u4e48\u77ed\u7684\u65f6\u95f4\u5185\uff0c\u6211\u83b7\u5f97\u4e86\u4e00\u751f\u90fd\u65e0\u6cd5\u4f01\u53ca\u7684\u89c6\u91ce\u3002\u6211\u53d8\u5f97\u66f4\u5584\u4e8e\u89e3\u51b3\u95ee\u9898\u3002\u6211\u5bf9\u81ea\u5df1\u548c\u4ed6\u4eba\u90fd\u66f4\u6709\u8010\u5fc3\u4e86\u3002\u6211\u73cd\u60dc\u6bcf\u4e00\u523b\u548c\u6bcf\u4e00\u6b65\u3002\u73b0\u5728\uff0c\u6211\u7b11\u770b\u4e91\u5377\u4e91\u8212\uff0c\u6e29\u67d4\u5730\u5bf9\u5f85\u6bcf\u4e00\u4e2a\u4eba\u3002\u52aa\u529b\u6210\u4e3a\u522b\u4eba\u5fc3\u76ee\u4e2d\u7684\u82f1\u96c4\u3002\u9664\u4e86\u7f79\u60a3 LGMD \u4e4b\u5916\uff0c\u6211\u8fd8\u662f\u6700\u5e78\u8fd0\u7684\u4eba\uff0c\u62e5\u6709\u6700\u597d\u7684\u5bb6\u4eba\u548c\u670b\u53cb\u3002<\/p>\n\n\n\n

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

\u6211\u4eec\u662f\u6709\u76ee\u6807\u3001\u6709\u62b1\u8d1f\u3001\u6709\u6fc0\u60c5\u3001\u6709\u611f\u60c5\u7684\u4eba\uff0c\u5c31\u50cf\u5176\u4ed6\u4eba\u4e00\u6837\u3002\u6211\u4eec\u4e2d\u7684\u5f88\u591a\u4eba\u66fe\u7ecf\u4e5f\u5f88 \"\u6b63\u5e38\"\u3002\u5982\u679c\u6bcf\u4e2a\u4eba\u90fd\u77e5\u9053\uff0cLGMD \u60a3\u8005\u8981\u5b8c\u6210\u6b63\u5e38\u7684\u65e5\u5e38\u751f\u6d3b\uff0c\u9700\u8981\u7ecf\u5386\u54ea\u4e9b\u56f0\u96be\u548c\u969c\u788d\uff0c\u4eba\u4eec\u5c31\u4f1a\u5f00\u59cb\u7406\u89e3\u6211\u4eec\u8fd9\u4e2a\u7fa4\u4f53\u662f\u591a\u4e48\u575a\u97e7\u548c\u987d\u5f3a\u3002\u4ed6\u4eec\u4f1a\u610f\u8bc6\u5230\uff0c\u8fd9\u662f\u4e00\u4e2a\u503c\u5f97\u4e3a\u4e4b\u594b\u6597\u7684\u793e\u533a\u548c\u75be\u75c5\u3002\u56e0\u6b64\uff0c\u5728\u7814\u7a76\u4eba\u5458\u548c\u79d1\u5b66\u5bb6\u4eec\u5f04\u6e05\u8fd9\u4e9b\u795e\u79d8\u75be\u75c5\u7684\u65f6\u5019\uff0c\u8bf7\u505a\u4e00\u540d\u5021\u5bfc\u8005\uff01<\/p>\n\n\n\n

\u5982\u679c\u60a8\u7684 LGMD \u660e\u5929\u5c31\u80fd \"\u6cbb\u6108\"\uff0c\u60a8\u9996\u5148\u60f3\u505a\u7684\u662f\u4ec0\u4e48\uff1f<\/strong>:<\/p>\n\n\n\n

\u6211\u4f1a\u5e26\u7740\u6211\u7684\u72d7\u5728\u9662\u5b50\u91cc\u8dd1\u6765\u8dd1\u53bb\uff0c\u548c\u4e00\u4f4d\u6f02\u4eae\u7684\u5973\u58eb\u8df3\u821e\uff0c\u548c\u6211\u7684\u670b\u53cb\u4eec\u6253\u6253\u68d2\u7403\uff0c\u53ef\u80fd\u8fd8\u4f1a\u722c\u5c71\uff0c\u5c31\u662f\u56e0\u4e3a\u8fd9\u6837\uff01<\/p>\n\n\n\n

\u5982\u9700\u9605\u8bfb\u66f4\u591a \"LGMD \u7126\u70b9\u8bbf\u8c08\"\uff0c\u6216\u81ea\u613f\u53c2\u52a0\u5373\u5c06\u4e3e\u884c\u7684\u8bbf\u8c08\uff0c\u8bf7\u8bbf\u95ee\u6211\u4eec\u7684\u7f51\u7ad9\uff1a http:\/\/lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

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