{"id":5506,"date":"2021-09-02T15:13:45","date_gmt":"2021-09-02T15:13:45","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5506"},"modified":"2024-02-09T14:24:01","modified_gmt":"2024-02-09T14:24:01","slug":"cyanne","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/zh\/individuals-with-lgmd-interviews\/2021\/09\/02\/cyanne\/","title":{"rendered":"\u60a3\u6709 LGMD \u7684\u4e2a\u4eba\uff1a Cyanne"},"content":{"rendered":"

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

\"\"<\/p>\n

\u540d\u79f0<\/strong>: Cyanne<\/p>\n

\u5e74\u9f84<\/strong>:\u00a0 29<\/p>\n

\u56fd\u5bb6<\/strong>: \u5357\u6fb3\u5927\u5229\u4e9a<\/p>\n

LGMD \u5b50\u7c7b\u578b<\/strong>: LGMD 2i \u578b \/ R9 \u808c\u52a8\u86cb\u767d\u76f8\u5173\u578b<\/p>\n

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

\u6211\u4e24\u5c81\u65f6\u5c31\u88ab\u8bca\u65ad\u51fa\u60a3\u6709\u808c\u8089\u840e\u7f29\u75c7\u3002\u76f4\u5230 21 \u5c81\uff0c\u6211\u624d\u53d1\u73b0\u81ea\u5df1\u60a3\u6709 LGMD 2i \u578b\u3002\u73b0\u5728\u6539\u540d\u4e3a R9\u3002<\/p>\n

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

\u6211\u5988\u5988\u6ce8\u610f\u5230\u7684\u7b2c\u4e00\u4e2a\u75c7\u72b6\u662f\uff0c\u5f53\u6211\u5750\u5728\u5a74\u513f\u5b66\u6b65\u8f66\u4e0a\u65f6\uff0c\u6211\u7684\u5934\u62ac\u4e0d\u8d77\u6765\u3002
\n\u6b64\u5916\uff0c\u6211\u8fd8\u4e0d\u4f1a\u722c\uff0c\u800c\u5176\u4ed6\u540c\u9f84\u4eba\u90fd\u4f1a\u722c\u3002\u6211\u53ea\u662f\u5728\u8eab\u4f53\u4e0a\u6323\u624e\u4e86\u5f88\u4e45\u3002<\/p>\n

\u6211\u6700\u521d\u53d1\u73b0\u7684\u75c7\u72b6\u662f\u8ddf\u4e0d\u4e0a\u5176\u4ed6\u5b69\u5b50\u7684\u6b65\u4f10\u3002\u6211\u53ea\u662f\u6ca1\u6709\u4ed6\u4eec\u8dd1\u5f97\u5feb\uff0c\u4f46\u8fd9\u4ece\u672a\u56f0\u6270\u8fc7\u6211\uff01\u6211\u77e5\u9053\u6211\u4e0e\u4f17\u4e0d\u540c\uff0c\u800c\u4e14\u6211\u4e5f\u80fd\u63a5\u53d7\u3002<\/p>\n

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

\u6211\u7684\u53cc\u80de\u80ce\u59b9\u59b9\u4e5f\u60a3\u6709 LGMD2i\uff0c\u4f46\u5bb6\u65cf\u4e2d\u6ca1\u6709\u5176\u4ed6\u5df2\u77e5\u75c5\u4f8b\u3002<\/p>\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

\u6211\u4e00\u76f4\u5728\u4e3a\u5931\u53bb\u72ec\u7acb\u800c\u6323\u624e\u3002\u968f\u7740\u65f6\u95f4\u7684\u63a8\u79fb\uff0c\u6211\u7684\u8eab\u4f53\u6bcf\u51b5\u6108\u4e0b\uff0c\u8d8a\u6765\u8d8a\u65e0\u6cd5\u72ec\u7acb\u3002\u5c31\u50cf\u751f\u6d3b\u4e00\u6837\u3002\u6211\u8fd8\u80fd\u627e\u5230\u6211\u68a6\u60f3\u7684\u5de5\u4f5c\u5417\uff1f\u6211\u4f1a\u9047\u5230\u6211\u7684\u68a6\u4e2d\u60c5\u4eba\u5417\uff1f\u6211\u8fd8\u80fd\u505a\u591a\u4e45\u6211\u559c\u6b22\u7684\u4e8b\u60c5\uff1f<\/p>\n

\u6211\u4e0e LGMD \u5171\u540c\u751f\u6d3b\u7684\u53e6\u4e00\u4e2a\u6311\u6218\u662f\uff0c\u4eba\u4eec\u5e38\u5e38\u53ea\u770b\u5230\u6211\u7684\u8f6e\u6905\u3002\u4ed6\u4eec\u770b\u4e0d\u5230\u5750\u5728\u8f6e\u6905\u4e0a\u7684\u4eba\u3002\u6211\u6b63\u5728\u52aa\u529b\u6539\u53d8\u8fd9\u79cd\u72b6\u51b5\uff0c\u901a\u8fc7\u6211\u7684\u793e\u533a\u548c\u66f4\u5e7f\u6cdb\u7684\u8303\u56f4\u63d0\u9ad8\u4eba\u4eec\u7684\u610f\u8bc6\u3002\u5411\u4eba\u4eec\u5c55\u793a\u548c\u89e3\u91ca\u6b8b\u75be\u4eba\u4e5f\u662f\u4eba\u3002\u6211\u4eec\u548c\u5176\u4ed6\u4eba\u4e00\u6837\u6709\u540c\u6837\u7684\u613f\u671b\u548c\u9700\u6c42\u3002<\/p>\n

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

\u54c7\uff0c\u6211\u89c9\u5f97\u6211\u60f3\u5728\u8fd9\u91cc\u590d\u5236\u7c98\u8d34\u6211\u7684\u7b80\u5386\u3002 \u54c8\u54c8\uff01<\/p>\n

\u8fd9\u4e9b\u5e74\u6765\uff0c\u968f\u7740\u804c\u4e1a\u9053\u8def\u7684\u6539\u53d8\uff0c\u6211\u4e5f\u8fdb\u884c\u4e86\u5927\u91cf\u7684\u5b66\u4e60\u3002\u6211\u82b1\u4e86\u81f3\u5c11 10 \u5e74\u65f6\u95f4\u5b66\u4e60\u5efa\u7b51\u3001\u5ba4\u5185\u8bbe\u8ba1\u548c\u88c5\u9970\u3002\u4e0d\u8fc7\uff0c\u540e\u6765\u6211\u6539\u53d8\u4e86\u804c\u4e1a\u65b9\u5411\uff0c\u73b0\u5728\u6211\u5f00\u59cb\u4ece\u4e8b\u5fc3\u7406\u54a8\u8be2\u5de5\u4f5c\uff0c\u5e76\u5f00\u59cb\u7814\u7a76\u827a\u672f\u7597\u6cd5\u3002\u8fd9\u4e9b\u5e74\u6765\uff0c\u6211\u5927\u6982\u603b\u5171\u5b66\u4e60\u4e86 20 \u95e8\u8bfe\u7a0b\u3002\u5176\u4e2d\u6709\u4e9b\u8bfe\u7a0b\u53ea\u662f\u65e5\u95f4\u8bfe\u7a0b\uff0c\u4e0d\u7528\u62c5\u5fc3\uff01 \u6211\u8fd8\u505a\u8fc7\u5f88\u591a\u5fd7\u613f\u8005\u3002\u6b64\u5916\uff0c\u6211\u8fd8\u662f\u90a3\u4e9b\u96be\u4ee5\u542f\u9f7f\u7684\u4eba\u7684\u4ee3\u8a00\u4eba\u3002\u6211\u8fd8\u53c2\u4e0e\u4e86\u6d77\u6ee9\u8f6e\u6905\u65e0\u969c\u788d\u6539\u9020\u9879\u76ee\u3002\u901a\u8fc7\u7b79\u6b3e\u8d2d\u4e70\u6c99\u6ee9\u8f6e\u6905\u548c\u6c99\u6ee9\u57ab\u3002\u6211\u8fd8\u52aa\u529b\u4e89\u53d6\u5efa\u7acb \"\u66f4\u8863\u5ba4 \"\u8bbe\u65bd\u3002\u8fd8\u6709\u66f4\u591a\u3002<\/p>\n

\u591a\u5e74\u6765\uff0c\u6211\u5728\u4e00\u4e9b\u6d3b\u52a8\u548c\u8bba\u575b\u4e0a\u53d1\u8868\u8fc7\u516c\u5f00\u6f14\u8bb2\uff0c\u4e0e\u5e02\u8bae\u4f1a\u5bc6\u5207\u5408\u4f5c\uff0c\u8fd8\u53bb\u8fc7\u56fd\u4f1a\u5927\u53a6\u3002\u6211\u66fe\u53d7\u9080\u53c2\u52a0\u5404\u79cd\u6d3b\u52a8\u548c\u8bba\u575b\uff0c\u4e5f\u66fe\u83b7\u5956\u3002\u6211\u751a\u81f3\u8fd8\u6709\u81ea\u5df1\u7684\u751f\u610f\u3002 \u8fd9\u53ea\u662f\u51b0\u5c71\u4e00\u89d2\uff01<\/p>\n

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

\u54e6\uff0c\u5b83\u7edd\u5bf9\u5f71\u54cd\u4e86\u6211\uff01\u6211\u4eca\u5929\u6240\u505a\u7684\u4e00\u5207\u90fd\u662f\u56e0\u4e3a LGMD\u3002\u5982\u679c\u6ca1\u6709\u5b83\uff0c\u6211\u60f3\u6211\u4eca\u5929\u4e0d\u4f1a\u662f\u73b0\u5728\u7684\u6211\u3002<\/p>\n

\u6211\u53d8\u5f97\u66f4\u6709\u8010\u5fc3\u3001\u66f4\u5f00\u660e\u3001\u66f4\u811a\u8e0f\u5b9e\u5730\uff0c\u660e\u767d\u4e86\u4efb\u4f55\u4e8b\u60c5\u90fd\u4e0d\u662f\u6ca1\u6709\u6311\u6218\u7684\u3002\u6211\u5f88\u73cd\u60dc\u81ea\u5df1\u8fd8\u80fd\u505a\u7684\u4e8b\u60c5\uff0c\u6bd4\u5982\u753b\u753b\uff0c\u56e0\u4e3a\u6211\u77e5\u9053\u6709\u4e00\u5929\u6211\u53ef\u80fd\u4e5f\u4f1a\u5931\u53bb\u8fd9\u79cd\u80fd\u529b\u3002 \u4f46\u6211\u5c06\u6c38\u8fdc\u62e5\u6709\u4e00\u9897\u575a\u5f3a\u7684\u5fc3\u3002\u6211\u53ef\u80fd\u4f1a\u5931\u53bb\u8eab\u4f53\u4e0a\u7684\u80fd\u529b\uff0c\u4f46\u6211\u6709\u4e00\u4e2a\u5f3a\u5927\u5065\u5eb7\u7684\u5fc3\u7075\uff0c\u6211\u4f1a\u4e00\u76f4\u7528\u5230\u6211\u6b7b\u7684\u90a3\u4e00\u5929\uff01<\/p>\n

\u6211\u60f3\uff0c\u6211\u4e00\u76f4\u90fd\u6709\u5e2e\u52a9\u522b\u4eba\u7684\u5f3a\u70c8\u613f\u671b\u3002\u6211\u77e5\u9053\u4e00\u70b9\u5e2e\u52a9\u5c31\u4f1a\u6709\u5f88\u5927\u7684\u6536\u83b7\u3002\u6211\u6b63\u51c6\u5907\u53bb\u505a\u5fc3\u7406\u54a8\u8be2\uff0c\u4e5f\u8bb8\u8fd8\u53ef\u4ee5\u7528\u827a\u672f\u7597\u6cd5\u6765\u5e2e\u52a9\u90a3\u4e9b\u9700\u8981\u5e2e\u52a9\u7684\u4eba\u3002<\/p>\n

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

\u55ef\uff0c\u8fd9\u5f88\u7b80\u5355\u3002\u80a2\u8170\u808c\u8425\u517b\u4e0d\u826f\u75c7\u5f88\u7cdf\u7cd5 \u80a2\u8170\u808c\u8425\u517b\u4e0d\u826f\u75c7\u662f\u4e00\u79cd\u5bfc\u81f4\u808c\u8089\u65e0\u529b\u7684\u75be\u75c5\u3002\u4f60\u7684\u808c\u8089\u4f1a\u9010\u6e10\u840e\u7f29\uff0c\u65e0\u6cd5\u83b7\u5f97\u6216\u589e\u52a0\u4efb\u4f55\u529b\u91cf\u3002\u968f\u7740\u65f6\u95f4\u7684\u63a8\u79fb\uff0c\u4f60\u7684\u808c\u8089\u4f1a\u4e0d\u65ad\u9000\u5316\uff0c\u8fd9\u4f1a\u8ba9\u4f60\u7684\u751f\u6d3b\u53d8\u5f97\u5f02\u5e38\u8270\u96be\u3002\u65e0\u8bba\u505a\u591a\u5c11\u8fd0\u52a8\u6216\u4e3e\u91cd\uff0c\u90fd\u65e0\u6cd5\u8ba9\u6211\u50cf\u666e\u901a\u4eba\u4e00\u6837\u7ec3\u51fa\u808c\u8089\u3002\u8fd9\u79cd\u75c5\u603b\u4f1a\u968f\u7740\u65f6\u95f4\u7684\u63a8\u79fb\u800c\u6076\u5316\u3002\u6ca1\u6709\u6cbb\u7597\u65b9\u6cd5\uff0c\u4e5f\u6ca1\u6709\u836f\u7269\u53ef\u4ee5\u5e2e\u52a9\u6211\u4eec\u3002<\/p>\n

\u8fd9\u8ba9\u751f\u6d3b\u53d8\u5f97\u56f0\u96be\u91cd\u91cd\uff0c\u5c24\u5176\u662f\u5f53\u4e00\u4e9b\u5730\u65b9\u65e0\u6cd5\u4f7f\u7528\u8f6e\u6905\u65f6\u3002\u8fd9\u53ea\u662f\u4e00\u4e2a\u53c8\u4e00\u4e2a\u969c\u788d\uff01<\/p>\n

\u5982\u679c\u60a8\u7684 LGMD \u53ef\u80fd\u662f <\/strong>\"<\/strong>\u660e\u5929\u5c31 \"\u75ca\u6108 \"\u4e86\uff0c\u4f60\u60f3\u505a\u7684\u7b2c\u4e00\u4ef6\u4e8b\u662f\u4ec0\u4e48\uff1f<\/strong>?<\/p>\n

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