{"id":3643,"date":"2020-09-15T17:53:22","date_gmt":"2020-09-15T22:53:22","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3643"},"modified":"2024-02-09T14:24:30","modified_gmt":"2024-02-09T14:24:30","slug":"kaya","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/zh\/individuals-with-lgmd-interviews\/2020\/09\/15\/kaya\/","title":{"rendered":"\u60a3\u6709 LGMD \u7684\u4e2a\u4eba\uff1a Kaya"},"content":{"rendered":"
\"\"<\/figure><\/div>\n\n\n\n

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

\u540d\u79f0<\/strong>:\u5361\u4e9a                           \u5e74\u9f84<\/strong>: 18 \u5c81<\/p>\n\n\n\n

\u56fd\u5bb6<\/strong>:\u8377\u5170<\/p>\n\n\n\n

LGMD \u5b50\u7c7b\u578b<\/strong>: LGMD 2D\/ R3 Alpha Sarcoglycan-related<\/p>\n\n\n\n

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

\u6211\u76f8\u4fe1\u90a3\u5e94\u8be5\u662f\u5728\u6211\u4e09\u5c81\u5de6\u53f3\uff0c\u867d\u7136\u6211\u8bb0\u4e0d\u6e05\u695a\u4e86\u3002\u6211\u4eec\u5f88\u65e9\u5c31\u786e\u8bca\u4e86\u3002<\/p>\n\n\n\n

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

\u6211\u548c\u59d0\u59d0\u51e0\u4e4e\u540c\u65f6\u51fa\u751f\uff0c\u6211\u7684\u7b2c\u4e00\u4e2a\u75c7\u72b6\u662f\u5f00\u59cb\u722c\u884c\uff0c\u59d0\u59d0\u5f88\u5065\u5eb7\uff0c\u5979\u50cf\u6b63\u5e38\u5a74\u513f\u4e00\u6837\u722c\u884c\uff0c\u800c\u6211\u7684\u722c\u884c\u65b9\u5f0f\u5f88\u5947\u602a\uff0c\u4e00\u6761\u817f\u5728\u524d\uff0c\u53e6\u4e00\u6761\u817f\u5728\u540e\uff0c\u57fa\u672c\u4e0a\u662f\u62d6\u7740\u81ea\u5df1\u722c\u884c\u3002 \u5bb6\u91cc\u7684\u4e00\u4f4d\u9488\u7078\u5e08\u548c\u597d\u670b\u53cb\u53d1\u73b0\u4e86\u8fd9\u4e00\u60c5\u51b5\uff0c\u5e76\u63d0\u9192\u4e86\u6211\u7684\u6bcd\u4eb2\uff0c\u56e0\u6b64\u6211\u88ab\u53ca\u65e9\u786e\u8bca\u3002 \u540e\u6765\u51fa\u73b0\u7684\u53e6\u4e00\u4e2a\u75c7\u72b6\u662f\u6211\u8dcc\u5012\u3002\u8fd9\u8868\u73b0\u5728\u6211\u521a\u5f00\u59cb\u4e0a\u5b66\u65f6\uff0c\u6211\u8bd5\u56fe\u8ddf\u4e0a\u540c\u5b66\u4eec\u7684\u6b65\u4f10\u3002\u5728\u901a\u8fc7\u4e34\u5e8a\u8bd5\u9a8c\u63a5\u53d7\u57fa\u56e0\u6cbb\u7597\u540e\uff0c\u540e\u4e00\u79cd\u75c7\u72b6\u5927\u5927\u51cf\u8f7b\uff0c\u5927\u7ea6\u4e24\u5e74\u6765\u6211\u518d\u4e5f\u6ca1\u6709\u6454\u5012\u8fc7\uff0c\u6211\u60f3\u8fd9\u662f\u5927\u591a\u6570\u5065\u5eb7\u4eba\u90fd\u65e0\u6cd5\u505a\u5230\u7684\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\uff0c\u6211\u5bb6\u53ea\u6709\u6211\u4e00\u4e2a\u4eba\u3002<\/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

\u5bf9\u6211\u6765\u8bf4\uff0c\u4e0e LGMD \u5171\u5b58\u5c31\u610f\u5473\u7740\u7ee7\u7eed\u594b\u6597\u3002\u6211\u6bcf\u5929\u90fd\u953b\u70bc\u3002\u53ea\u662f\u4e00\u4e9b\u57fa\u672c\u7684\u8fd0\u52a8\uff0c\u6bd4\u5982\u4e24\u6b21\u4e94\u5206\u949f\u7684\u4ea4\u53c9\u8bad\u7ec3\uff0c\u4e24\u6b21\u4e00\u5206\u949f\u7684\u5e73\u677f\u652f\u6491\u7b49\u7b49\u3002\u6709\u4e9b\u65f6\u5019\uff0c\u6211\u5f88\u96be\u4fdd\u6301\u79ef\u6781\u7684\u5fc3\u6001\uff0c\u627e\u5230\u50cf\u73b0\u5728\u8fd9\u6837\u52aa\u529b\u5de5\u4f5c\u7684\u52a8\u529b\u3002\u6bcf\u4e2a\u4eba\u5bf9\u6297 LGMD \u7684\u65b9\u6cd5\u90fd\u4e0d\u5c3d\u76f8\u540c\uff0c\u6211\u7684\u65b9\u6cd5\u662f\u4e00\u79cd\u76f8\u5f53\u76f4\u622a\u4e86\u5f53\u7684\u65b9\u6cd5\uff0c\u8fc4\u4eca\u4e3a\u6b62\u5bf9\u6211\u5f88\u6709\u5e2e\u52a9\u3002\u4f46\u8fd9\u79cd\u6001\u5ea6\u4e5f\u4ed8\u51fa\u4e86\u76f8\u5f53\u5927\u7684\u4ee3\u4ef7\uff0c\u56e0\u4e3a\u6211\u7684\u540c\u9f84\u4eba\u5e76\u4e0d\u8ba4\u540c\u6211\u7684\u8fd9\u79cd\u6001\u5ea6\uff0c\u8fd9\u8ba9\u6211\u5f88\u96be\u4e0e\u4ed6\u4eec\u5efa\u7acb\u4efb\u4f55\u8054\u7cfb\uff0c\u751a\u81f3\u5728\u51a0\u72b6\u75c5\u6bd2\u5c01\u9501\u4e4b\u524d\uff0c\u6211\u5c31\u5df2\u7ecf\u9677\u5165\u4e86\u793e\u4ea4\u5b64\u7acb\u3002<\/p>\n\n\n\n

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

\u6211\u8fd8\u5728\u8fd9\u91cc\uff0c\u800c\u4e14\u6bd4\u4ee5\u524d\u66f4\u5f3a\u58ee\u4e86\u3002\u5982\u524d\u6240\u8ff0\uff0c\u6211\u5728\u4e00\u9879\u4e34\u5e8a\u8bd5\u9a8c\u4e2d\u63a5\u53d7\u4e86\u57fa\u56e0\u6cbb\u7597\u3002\u63a5\u53d7\u6cbb\u7597\u540e\uff0c\u6211\u5f00\u59cb\u52aa\u529b\u8ba9\u6211\u7684\u8eab\u4f53\u8fbe\u5230\u6211\u60f3\u8981\u7684\u72b6\u6001\u3002\u5728\u8bd5\u9a8c\u4e4b\u524d\uff0c\u6211\u975e\u5e38\u52aa\u529b\u5730\u5de5\u4f5c\uff0c\u4ee5\u5c3d\u91cf\u51cf\u5c11\u4efb\u4f55\u635f\u4f24\uff0c\u8fd9\u5bf9\u4e8e\u4e00\u4e2a\u5e74\u8f7b\u7684\u5b69\u5b50\u6765\u8bf4\u662f\u76f8\u5f53\u56f0\u96be\u7684\uff0c\u56e0\u4e3a\u6211\u5fc5\u987b\u59cb\u7ec8\u8d1f\u8d23\u4efb\uff0c\u5e76\u670d\u7528\u8bb8\u591a\u5e76\u4e0d\u603b\u662f\u4ee5\u53ef\u53e3\u8457\u79f0\u7684\u4fdd\u5065\u54c1\uff0c\u800c\u5728\u63a5\u53d7\u8bd5\u9a8c\u540e\uff0c\u6211\u5f00\u59cb\u8fd0\u52a8\uff0c\u611f\u89c9\u81ea\u5df1\u53d8\u5f97\u8d8a\u6765\u8d8a\u5f3a\u58ee\uff0c\u6574\u4f53\u72b6\u51b5\u4e5f\u8d8a\u6765\u8d8a\u597d\u3002\u8bf4\u6211\u6218\u80dc\u4e86 LGMD \u8fd8\u4e3a\u65f6\u8fc7\u65e9\uff0c\u56e0\u6b64\u4e5f\u662f\u611a\u8822\u7684\uff0c\u4f46\u6211\u66f4\u613f\u610f\u8bf4\uff0c\u6211\u73b0\u5728\u6b63\u5728\u5411\u5b83\u7ad6\u8d77\u4e00\u6839\u624b\u6307\u81f4\u656c\u3002<\/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


\u4f5c\u4e3a\u4e00\u4e2a\u5e74\u8f7b\u7684\u5b69\u5b50\uff0cLGMD \u8feb\u4f7f\u6211\u5fc5\u987b\u975e\u5e38\u8d1f\u8d23\u4efb\uff0c\u56e0\u4e3a\u6bcf\u4e00\u4e2a\u9519\u8bef\u7684\u52a8\u4f5c\u90fd\u53ef\u80fd\u8ba9\u6211\u6454\u5012\uff0c\u6454\u574f\u4e1c\u897f\u3002\u5b83\u8fd8\u8feb\u4f7f\u6211\u503e\u5c3d\u5168\u529b\uff0c\u5c3d\u6211\u6240\u80fd\uff0c\u4e0e\u65e0\u6cd5\u6218\u80dc\u7684\u56f0\u96be\u4f5c\u6597\u4e89\u3002\u5b83\u8fd8\u8ba9\u6211\u61c2\u5f97\u73cd\u60dc\u751f\u547d\u548c\u6240\u6709\u7f8e\u597d\u65f6\u5149\u3002\u5b83\u5f71\u54cd\u4e86\u6211\u7684\u4ef7\u503c\u89c2\u548c\u5de5\u4f5c\u91cd\u70b9\u3002\u4ece\u6211\u542c\u7684\u97f3\u4e50\u3001\u5236\u4f5c\u7684\u97f3\u4e50\u3001\u5728\u5b66\u6821\u7684\u5de5\u4f5c\u6001\u5ea6\uff0c\u4e00\u76f4\u5230\u6211\u559c\u6b22\u4e0e\u4ec0\u4e48\u6837\u7684\u4eba\u5728\u4e00\u8d77\uff0c\u6240\u6709\u8fd9\u4e9b\u5f71\u54cd\u90fd\u4f53\u73b0\u5728\u6211\u7684\u4e00\u5207\u884c\u4e3a\u4e2d\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\u60f3\u8ba9\u5168\u4e16\u754c\u77e5\u9053\uff0c\u4eba\u4eec\u6b63\u5728\u4e0d\u61c8\u5730\u52aa\u529b\u5e2e\u52a9\u6211\u4eec\u3002\u6211\u4eb2\u773c\u76ee\u7779\u4e86\u4e3a\u5f7b\u5e95\u6cbb\u6108\u75be\u75c5\u800c\u6295\u5165\u4f7f\u7528\u7684\u5e9e\u5927\u5b9e\u9a8c\u5ba4\u548c\u8bbe\u65bd\uff0c\u4eb2\u8eab\u611f\u53d7\u5230\u4ed6\u4eec\u6b63\u5728\u7814\u7a76\u4e00\u4e9b\u597d\u4e1c\u897f\u3002\u6211\u60f3\u8bf4\uff0c\u8fd9\u4e00\u9886\u57df\u6b63\u4ee5\u4ee4\u4eba\u96be\u4ee5\u7f6e\u4fe1\u7684\u901f\u5ea6\u5411\u524d\u53d1\u5c55\uff0c\u4ece\u800c\u7f13\u89e3\u4f60\u4eec\u7684\u7edd\u671b\u60c5\u7eea\u3002\u6211\u5411\u4f60\u4fdd\u8bc1\uff0c\u603b\u6709\u4e00\u5929\u4f1a\u6709\u7535\u8bdd\u6253\u7ed9\u4f60\uff0c\u8bf4'\u4f60\u597d\uff0c\u6211\u76f8\u4fe1\u6211\u53ef\u80fd\u6709\u4e1c\u897f\u7ed9\u4f60'\u3002<\/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\u8ba4\u4e3a\uff0c\u5e94\u8be5\u5411\u6240\u6709\u524d LGMD \u4eba\u5458\u548c\u4e86\u4e0d\u8d77\u7684\u7814\u7a76\u4eba\u5458\u8868\u793a\u70ed\u70c8\u795d\u8d3a\u3002<\/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":"

LGMD \u201cSPOTLIGHT INTERVIEW\u201d  Name: Kaya                           Age:  18 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":3654,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,28],"tags":[],"class_list":["post-3643","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2d"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Kaya - 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\/2020\/09\/15\/kaya\/\" \/>\n<meta property=\"og:locale\" content=\"zh_CN\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Kaya - 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