{"id":1638,"date":"2017-12-04T15:59:19","date_gmt":"2017-12-04T21:59:19","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1638"},"modified":"2017-12-04T15:59:19","modified_gmt":"2017-12-04T21:59:19","slug":"deceena","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/zh\/individuals-with-lgmd-interviews\/2017\/12\/04\/deceena\/","title":{"rendered":"\u60a3\u6709 LGMD \u7684\u4e2a\u4eba\uff1a Deceena"},"content":{"rendered":"

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

\u540d\u79f0<\/strong><\/span>:\u00a0 <\/span>\u5fb7\u897f\u5a1c\u00a0 \u00a0\u5e74\u9f84<\/strong>:31 \u5c81\"\"<\/a><\/span><\/p>\n

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

LGMD \u5b50\u7c7b\u578b<\/strong>: LGMD2A - \u53c8\u79f0\u9499\u86cb\u767d\u9176\u75c5<\/span><\/p>\n

 <\/p>\n

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

\u6211\u662f\u5728 29 \u5c81\u65f6\u88ab\u786e\u8bca\u7684\u3002<\/span><\/p>\n

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

\u817f\u90e8\u808c\u8089\u65e0\u529b\u662f\u6211\u7684\u7b2c\u4e00\u4e2a\u75c7\u72b6\u3002\u6211\u65e0\u6cd5 <\/span>\u697c\u4e0a \u4ece 2008 \u5e74\u6211\u751f\u4e0b\u7b2c\u4e8c\u4e2a\u5b69\u5b50\u540e\uff0c\u6211\u5c31\u50cf\u4e2a\u6b63\u5e38\u4eba\u4e00\u6837\u3002\u533b\u751f\u628a\u8fd9\u5f52\u548e\u4e8e\u521a\u751f\u5b8c\u5b69\u5b50\uff0c\u5e76\u5efa\u8bae\u6211\u53bb\u953b\u70bc\u8eab\u4f53\u3002\u6211\u5f53\u65f6\u53ea\u6709 22 \u5c81\uff0c\u4f46\u6211\u77e5\u9053\u8fd9\u91cc\u9762\u80af\u5b9a\u6709\u95ee\u9898\u3002\u6211\u53ea\u5e0c\u671b\u533b\u751f\u80fd\u66f4\u8ba4\u771f\u5730\u5bf9\u5f85\u6211\u3002\u6211\u770b\u4e86\u5f88\u591a\u533b\u751f\u548c\u4e13\u5bb6\uff0c\u4ed6\u4eec\u90fd\u8bf4\u6211 \"\u6ca1\u4e8b\"\u3002\u6700\u540e\uff0c\u6211\u627e\u5230\u4e86\u4e00\u4f4d\u5168\u79d1\u533b\u751f\uff0c\u4ed6\u8bf4\u4e86\u4e00\u53e5\u8bdd\uff1a\"\u5929\u54ea\uff0c\u4e3a\u4ec0\u4e48\u6ca1\u4eba\u5e2e\u4f60\uff1f\u4ed6\u8ba9\u6211\u53bb\u505a\u5eb7\u590d\u8bad\u7ec3\uff0c\u6700\u540e\u4e00\u6b21 <\/span>\u5929 \u6211\u7684\u6cbb\u7597\u5e08\u95ee\u6211\uff0c\u6211\u7684\u5bb6\u4eba\u4e2d\u6709\u4eba\u60a3\u6709\u808c\u8089\u840e\u7f29\u75c7\u5417\uff1f(\u6ca1\u6709\uff09\u3002\u4ed6\u5411\u6211\u63d0\u5230\u6709\u4e00\u4e9b\u5f62\u5f0f\u7684\u808c\u8089\u840e\u7f29\u75c7\u662f\u9690\u6027\u7684\uff0c\u4ed6\u5efa\u8bae\u6211\u7684\u533b\u751f\u5f00\u59cb\u5bfb\u627e\u9002\u5f53\u7684\u68c0\u67e5\u548c\u8f6c\u8bca\u3002\u8fd9\u662f\u7b2c\u4e00\u4e2a\u5411\u6211\u63d0\u53ca \"\u808c\u8089\u840e\u7f29\u75c7 \"\u7684\u4eba\u3002\u4e4b\u540e\uff0c\u6211\u5728 Facebook \u4e0a\u53d1\u73b0\u4e86\u4e00\u4e2a\u5f88\u68d2\u7684\u7fa4\u7ec4\uff0c\u5b83\u5141\u8bb8\u6211\u53d1\u5e03\u81ea\u5df1\u7684\u89c6\u9891\u3002\u6b64\u540e\u4e0d\u4e45\uff0c\u6211\u5728\u8a79\u6069\u57fa\u91d1\u4f1a\u7684\u5f15\u5bfc\u4e0b\u5f00\u59cb\u4e86\u57fa\u56e0\u7814\u7a76\u3002<\/span>, \u540e\u6765\uff0c\u6211\u53bb\u770b\u4e86\u6770\u91cc-\u95e8\u5fb7\u5c14\u533b\u751f\uff08Dr. Jerry Mendel\uff09\uff0c\u6700\u7ec8\u786e\u8bca\u4e3a LGMD2A\u3002\u6211\u7684\u65b0\u533b\u7597\u673a\u6784\u7684\u6cbb\u7597\u8fc7\u7a0b<\/span>, \u4ece\u57fa\u56e0\u68c0\u6d4b\u5230\u786e\u8bca\uff0c\u6211\u7ecf\u5386\u4e86\u5927\u7ea6 3 \u4e2a\u6708\u7684\u65f6\u95f4\uff0c\u800c\u5728\u6b64\u4e4b\u524d\u7684\u8bb8\u591a\u5e74\u91cc\uff0c\u6211\u4e00\u76f4\u88ab\u544a\u77e5\u81ea\u5df1 \"\u5f88\u597d\"\uff0c\u53ef\u4ee5\u953b\u70bc\u8eab\u4f53\u3002\u6211\u7684\u8bca\u65ad\u7ed3\u679c\u662f <\/span>\u5173\u4e8e \u5c0f\u5973\u513f 1\u7ad9<\/sup> \u751f\u65e5\u3002\u6211\u5c06\u6c38\u8fdc\u94ed\u8bb0\u8fd9\u4e00\u5929....<\/span><\/p>\n

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

\u6211\u7684\u5bb6\u65cf\u4e2d\u6ca1\u6709\u4eba\u60a3\u6709 LGMD\u3002<\/span><\/p>\n

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

\u76ee\u524d\uff0c\u6211\u9762\u4e34\u7684\u6700\u5927\u6311\u6218\u662f\u5411\u5b69\u5b50\u4eec\u89e3\u91ca\u6211\u65e0\u6cd5\u8fdb\u884c\u67d0\u4e9b\u6d3b\u52a8\u3001\u65e0\u6cd5\u4e0e\u4ed6\u4eec\u4e00\u8d77\u5954\u8dd1\u73a9\u800d\uff0c\u751a\u81f3\u65e0\u6cd5\u7ed9\u4ed6\u4eec\u5217\u6e05\u5355\uff0c\u5e76\u89e3\u91ca\u539f\u56e0\u3002\u6709\u65f6\u5f88\u96be\u56de\u7b54\u4ed6\u4eec\u7684\u95ee\u9898\u3002\u7b2c\u4e8c\u5927\u6311\u6218\u662f\u6709\u4eba\u5bf9\u6211\u8bf4\u4e09\u9053\u56db\uff0c\u8bf4\u6211\u5e94\u8be5\u628a\u6b8b\u75be\u4eba\u505c\u8f66\u4f4d\u7559\u7ed9\u6b8b\u75be\u4eba\u3002\u6211\u53ef\u80fd\u770b\u8d77\u6765\u50cf\u4e00\u4e2a \"\u6b63\u5e38 \"\u7684\u4eba\uff0c\u4f46\u662f\uff0c\u6211\u786e\u5b9e\u5f88\u96be\u8d70\u5f88\u8fdc\u7684\u8def\uff0c\u5982\u679c\u6ca1\u6709\u6211\u4e08\u592b\u7684\u5e2e\u52a9\uff0c\u6211\u518d\u4e5f\u4e0d\u80fd\u4e0a\u697c\u68af\u6216\u8d70\u8def\u8fb9\u4e86\u3002<\/span><\/p>\n

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

\u6211\u60f3\u8bf4\uff0c\u6211\u6700\u5927\u7684\u6210\u5c31\u662f\u5b66\u4f1a\u4e86\u5bf9\u6240\u6709\u4eba\u7684\u7231\u548c\u540c\u60c5\u3002\u6211\u4ece\u672a\u610f\u8bc6\u5230\u6b8b\u75be\u4eba\u58eb\u6240\u9762\u4e34\u7684\u60c5\u611f\u6311\u6218\u3002\u5927\u591a\u6570\u4eba\u4f1a\u8ba4\u4e3a\u8fd9\u53ea\u662f\u8eab\u4f53\u4e0a\u7684\uff0c\u4f46\u4e8b\u5b9e\u5e76\u975e\u5982\u6b64\u3002\u6211\u627e\u5230\u4e86\u4e00\u4e2a\u4f34\u4fa3\uff0c\u4ed6\u9009\u62e9\u7ad9\u5728\u6211\u8eab\u8fb9\uff0c9 \u5929\u540e\u4ecd\u7136\u5ac1\u7ed9\u4e86\u6211\u3002\u6211\u4eec\u8fdb\u884c\u4e86\u4e00\u6b21\u975e\u5e38\u5766\u8bda\u548c\u8270\u96be\u7684\u5bf9\u8bdd\uff08\u5bf9\u6211\u6765\u8bf4\uff09\uff0c\u8ba8\u8bba\u6211\u4eec\u662f\u5426\u5e94\u8be5\u7ee7\u7eed\u4e0b\u53bb\uff0c\u56e0\u4e3a\u6211\u4eec\u77e5\u9053\u9762\u5bf9\u8fd9\u79cd\u53ef\u6015\u7684\u75be\u75c5\uff0c\u6211\u4eec\u5728\u8eab\u4f53\u4e0a\u3001\u60c5\u611f\u4e0a\u548c\u7cbe\u795e\u4e0a\u90fd\u4f1a\u9047\u5230\u56f0\u96be\u3002\u4ed6\u77e5\u9053\u6211\u60a3\u6709\u6e10\u8fdb\u6027\u795e\u7ecf\u75be\u75c5\uff0c\u672c\u53ef\u4ee5\u4e00\u8d70\u4e86\u4e4b\uff0c\u4f46\u4ed6\u65e0\u6761\u4ef6\u5730\u7231\u7740\u6211\uff0c\u8ba9\u6211\u61c2\u5f97\u4e86\u65e0\u6761\u4ef6\u7684\u7231\u548c\u63a5\u7eb3\u7684\u771f\u6b63\u542b\u4e49\u3002\u4ed6\u6559\u4f1a\u6211\u5728\u4efb\u4f55\u60c5\u51b5\u4e0b--\u5373\u4f7f\u662f\u6211\u4eec\u8ba4\u4e3a\u5f88\u7cdf\u7cd5\u7684\u60c5\u51b5--\u90fd\u8981\u7231\u5f97\u66f4\u6df1\u3001\u66f4\u6301\u4e45\u3002\u6211\u4eec\u5efa\u7acb\u4e86\u4e00\u4e2a\u7f8e\u597d\u7684\u5bb6\u5ead\uff0c\u8fd9\u662f\u6211\u6700\u5927\u7684\u6210\u5c31\u3002\u6211\u5e0c\u671b\u6211\u4eec\u80fd\u7ee7\u7eed\u4ee5\u8eab\u4f5c\u5219\uff0c\u5e26\u7740\u7231\u548c\u6148\u60b2\uff0c\u8ba9\u6211\u4eec\u7684\u5b69\u5b50\u770b\u5230\u5e76\u5e0c\u671b\u4ed6\u4eec\u751f\u6d3b\u5728\u7231\u548c\u6148\u60b2\u4e4b\u4e2d\u3002\u8fd9\u4e2a\u4e16\u754c\u5c06\u4f1a\u53d8\u5f97\u66f4\u52a0\u7f8e\u597d <\/span>\u662f \u4eba\u4eec\u628a\u4eba\u5f53\u4eba\u770b\uff0c\u800c\u4e0d\u662f\u628a\u6b8b\u75be\u5f53\u6b8b\u75be\u770b\u3002<\/span><\/p>\n

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

\u60a3\u4e0a LGMD \u8ba9\u6211\u5b66\u4f1a\u4e86\u5982\u4f55\u5021\u5bfc\u548c\u5927\u58f0\u75be\u547c\u3002\u591a\u5e74\u6765\uff0c\u6211\u4e0d\u5f97\u4e0d\u4e3a\u81ea\u5df1\u8fa9\u62a4\uff0c\u544a\u8bc9\u533b\u751f\u4ed6\u4eec\u9519\u4e86\u3002\u8c01\u4f1a\u8fd9\u4e48\u505a\uff1f\u5c31\u662f\u8fd9\u4e2a\u5973\u5b69\uff01\u8fd9\u542f\u53d1\u4e86\u6211\uff0c\u8ba9\u6211\u73b0\u5728\u4e5f\u80fd\u4e3a\u81ea\u5df1\u4ee3\u8a00\u3002 <\/span>\u5bf9\u4e8e \u5176\u4ed6\u4eba\u3002\u6211\u5168\u5fc3\u5168\u610f\u5730\u4e3a\u90a3\u4e9b\u65e0\u6cd5<\/span>, \u6216\u90a3\u4e9b\u53ef\u80fd\u9700\u8981\u4e00\u4e9b\u5e2e\u52a9\u7684\u4eba\u3002\u6211\u5c06\u6b8b\u75be\u89c6\u4e3a\u4e00\u79cd\u5929\u8d4b\u3002\u6211\u83b7\u5f97\u7684\u673a\u4f1a\u6709\u52a9\u4e8e\u786e\u5b9a\u548c\u5851\u9020\u6211\u4eca\u5929\u7684\u4fe1\u5ff5\u3002\u6211\u4f1a\u4e00\u76f4\u5927\u58f0\u75be\u547c\uff0c\u5373\u4f7f\u5728\u4e0d\u8212\u670d\u7684\u65f6\u5019\uff0c\u5373\u4f7f\u5728\u522b\u4eba\u4e0d\u613f\u610f\u7684\u65f6\u5019\u3002\u6211\u4f1a\u4e00\u76f4\u8d28\u7591\u6211\u7684\u533b\u751f\uff0c\u800c\u4e14\u4e0d\u4f1a\u505c\u6b62\u3002\u60a3\u4e0a LGMD \u8ba9\u6211\u53d8\u6210\u4e86\u4eca\u5929\u8fd9\u6837\u4e00\u4e2a\u5145\u6ee1\u52a8\u529b\u548c\u51b3\u5fc3\u7684\u4eba\u3002<\/span><\/p>\n

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

\u6211\u90fd\u4e0d\u77e5\u9053\u8be5\u4ece\u4f55\u8bf4\u8d77\u8fd9\u4e2a\u95ee\u9898\u3002\u4e3b\u8981\u662f\uff0c\u60a3\u6709 LGMD \u7684\u4eba\u4e0e\u6ca1\u6709 LGMD \u7684\u4eba\u6ca1\u6709\u4ec0\u4e48\u4e0d\u540c\u3002\u6211\u4f9d\u7136\u4f1a\u547c\u5438\uff0c\u4f9d\u7136\u4f1a\u6709\u611f\u89c9\u3002\u6211\u8fd8\u662f\u4e00\u6837\u7231\uff0c\u4e00\u6837\u75db\u3002\u6211\u60f3\u8981\u5feb\u4e50\uff0c\u60f3\u8981\u548c\u6ca1\u6709 LGMD \u7684\u4eba\u62e5\u6709\u540c\u6837\u7684\u673a\u4f1a\u3002\u6211\u6ca1\u6709\u4ec0\u4e48\u4e0d\u540c\uff0c\u53ea\u662f\u53ef\u80fd\u5bf9\u4eba\u4eec\u7684\u5f85\u4eba\u63a5\u7269\u65b9\u5f0f\u6709\u4e86\u66f4\u591a\u7684\u4e86\u89e3\u3002<\/span><\/p>\n

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

\u6211\u505a\u7684\u7b2c\u4e00\u4ef6\u4e8b\u7edd\u5bf9\u662f\u8dd1\u5411\u6211\u7684\u5b69\u5b50\u4eec\uff0c\u7136\u540e\u548c\u4ed6\u4eec\u5728\u5730\u677f\u4e0a\u6454\u8de4\uff0c\u548c\u4ed6\u4eec\u4e00\u8d77\u8df3\u8d77\u6765\u628a\u4ed6\u4eec\u629b\u5411\u7a7a\u4e2d\u3002\u6211\u5bf9\u8fd9\u79cd\u751f\u6d3b\u7684\u6000\u5ff5\u65e0\u6cd5\u7528\u8a00\u8bed\u8868\u8fbe\u3002\u6211\u7684\u4e24\u4e2a\u5927\u5b69\u5b50\u5206\u522b\u5feb 12 \u5c81\u548c 9 \u5c81\u4e86\uff0c\u6211\u53ef\u4ee5\u548c\u4ed6\u4eec\u4e00\u8d77\u505a\u8fd9\u4e9b\u4e8b\u60c5\u3002<\/span>, \u4e4b\u540e\uff0c\u6211\u4f1a\u6251\u8fdb\u4e08\u592b\u7684\u6000\u91cc\uff0c\u5728\u4ed6\u6000\u91cc\u5446\u4e00\u4f1a\u513f\u3002\u7136\u540e\uff0c\u6211\u9700\u8981\u53bb\u8dd1\u6b65\uff0c\u957f\u8dd1\u3002\u8dd1\u6b65\u662f\u6211\u7684\u9996\u9009\u6d3b\u52a8\uff0c\u6211\u5df2\u7ecf\u5f88\u591a\u5e74\u4e0d\u80fd\u8fd9\u6837\u505a\u4e86\u3002<\/span><\/p>\n

 <\/p>\n

* * * \u6b32\u4e86\u89e3\u66f4\u591a \"LGMD \u805a\u7126\u8bbf\u8c08 \"\u6216\u81ea\u613f\u53c2\u52a0\u5373\u5c06\u4e3e\u884c\u7684\u8bbf\u8c08\uff0c\u8bf7\u8bbf\u95ee\u6211\u4eec\u7684\u7f51\u7ad9<\/span>: https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a>\u00a0<\/span><\/p>\n

* * * \u8bf7\u70b9\u8d5e\u3001\u8bc4\u8bba\u548c\u5206\u4eab\u672c\u5e16\uff0c\u5e2e\u52a9\u63d0\u9ad8\u4eba\u4eec\u5bf9 LGMD \u7684\u8ba4\u8bc6\uff01<\/span><\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSpotlight Interview\u201d Name:\u00a0 Deceena\u00a0 \u00a0Age: 31 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":1637,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-1638","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a-calpainopathy-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Deceena - LGMD Awareness Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.lgmd-info.org\/zh\/individuals-with-lgmd-interviews\/2017\/12\/04\/deceena\/\" \/>\n<meta property=\"og:locale\" content=\"zh_CN\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Deceena - 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