{"id":5635,"date":"2022-02-08T04:21:00","date_gmt":"2022-02-08T04:21:00","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5635"},"modified":"2024-02-09T14:23:56","modified_gmt":"2024-02-09T14:23:56","slug":"individual-with-lgmd-john","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/zh\/individuals-with-lgmd-interviews\/2022\/02\/08\/individual-with-lgmd-john\/","title":{"rendered":"\u60a3\u6709 LGMD \u7684\u4e2a\u4eba\uff1a \u7ea6\u7ff0"},"content":{"rendered":"

\"<\/p>\n

\u540d\u79f0<\/strong>: \u7ea6\u7ff0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u5e74\u9f84<\/strong>: 28 \u5c81<\/p>\n

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

LGMD \u5b50\u7c7b\u578b<\/strong>: \u4e0e LGMD 2J\/R10 titin \u76f8\u5173<\/p>\n

 <\/p>\n

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

10 \u5c81\u65f6\uff0c\u6211\u88ab\u8bca\u65ad\u51fa\u60a3\u6709\u8d1d\u514b\u5c14\u6c0f\u808c\u8089\u840e\u7f29\u75c7\u3002 \u5927\u7ea6\u5728\u5341\u4e00\u4e8c\u5c81\u65f6\uff0c\u6211\u53c8\u88ab\u8bca\u65ad\u51fa\u60a3\u6709\u7ebf\u7c92\u4f53\u808c\u75c5\u3002 2016 \u5e74\uff0c\u6211\u88ab\u8bca\u65ad\u51fa\u60a3\u6709 LGMD\uff0c2021 \u5e74\uff0cLGMD2J\/R10 \u6700\u7ec8\u5f97\u5230\u57fa\u56e0\u8bc1\u5b9e\u3002<\/p>\n

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

\u6211\u5728 5 \u5c81\u5de6\u53f3\u5c31\u96be\u4ee5\u6b63\u5e38\u884c\u8d70\u3002 \u8fd0\u52a8\u65f6\uff0c\u6211\u7684\u5c0f\u817f\u75bc\u75db\u96be\u5fcd\uff0c\u5f88\u96be\u8ddf\u4e0a\u5176\u4ed6\u5b69\u5b50\u7684\u6b65\u4f10\u3002<\/p>\n

\u60a8\u6709\u5176\u4ed6\u5bb6\u5ead\u6210\u5458\u60a3\u6709 LGMD \u5417\uff1f<\/strong><\/p>\n

\u6211\u54e5\u54e5\u4e5f\u60a3\u6709 LGMD2J\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

\u6700\u5927\u7684\u6311\u6218\u662f\u5931\u53bb\u505a\u81ea\u5df1\u559c\u6b22\u7684\u4e8b\u60c5\u7684\u80fd\u529b\uff0c\u4ee5\u53ca\u7531\u4e8e\u8eab\u4f53\u9010\u6e10\u865a\u5f31\u800c\u4e0d\u5f97\u4e0d\u53cd\u590d\u5bfb\u627e\u65b0\u7684\u7231\u597d\u3002 \u8fd9\u8ba9\u6211\u96be\u4ee5\u627f\u53d7\u3002 \u73b0\u5728\u6211\u8fd8\u53d1\u73b0\uff0c\u5982\u679c\u6ca1\u6709\u6211\u4e86\u4e0d\u8d77\u7684\u59bb\u5b50\u514b\u91cc\u65af\u8482\u5a1c\u7684\u5e2e\u52a9\uff0c\u6211\u5f88\u96be\u751a\u81f3\u4e0d\u53ef\u80fd\u72ec\u7acb\u5b8c\u6210\u65e5\u5e38\u6d3b\u52a8\u3002\u4e0d\u5e78\u7684\u662f\uff0c\u7531\u4e8e\u6211\u7684\u6b8b\u75be\u6027\u8d28\u548c\u6211\u4f7f\u7528\u7684\u79fb\u52a8\u8bbe\u5907\uff0c\u6211\u7ecf\u5e38\u53d7\u5230\u6b67\u89c6\uff0c\u65e0\u6cd5\u8fdb\u5165\u4e00\u4e9b\u516c\u5171\u573a\u6240\u3002<\/p>\n

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

\u4e0e\u7f8e\u4e3d\u7684\u59bb\u5b50\u514b\u91cc\u65af\u8482\u5a1c\u7ed3\u5a5a\uff0c\u5e76\u83b7\u5f97\u5316\u5b66\u5b66\u58eb\u5b66\u4f4d\u3002<\/p>\n

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

\u8fd9\u79cd\u75be\u75c5\u786e\u5b9e\u5851\u9020\u4e86\u4eca\u5929\u7684\u6211\uff0c\u5b83\u5bf9\u6211\u63d0\u51fa\u4e86\u6311\u6218\uff0c\u8ba9\u6211\u7ed3\u8bc6\u4e86\u6b8b\u75be\u4eba\u7fa4\u4f53\u4e2d\u7684\u5176\u4ed6\u4eba\uff0c\u5e76\u4fc3\u4f7f\u6211\u6210\u4e3a\u4eca\u5929\u7684\u5021\u5bfc\u8005\u3002 \u8eab\u4f53\u80fd\u529b\u7684\u9650\u5236\u8ba9\u6211\u6210\u4e3a\u4e00\u4e2a\u66f4\u6709\u521b\u9020\u529b\u7684\u95ee\u9898\u89e3\u51b3\u8005\uff0c\u4e5f\u8ba9\u6211\u5b66\u4f1a\u4e86\u5f88\u591a\u5173\u4e8e\u8010\u5fc3\u7684\u9053\u7406\u3002 \u6709\u65f6\u5019\uff0c\u6211\u771f\u7684\u611f\u89c9\u88ab\u75be\u75c5\u51fb\u5012\u4e86\uff0c\u4f46\u91cd\u8981\u7684\u662f\u6211\u8981\u8bb0\u4f4f\uff0c\u5728\u4e3a\u50cf\u6211\u8fd9\u6837\u7684\u75c5\u75c7\u4e89\u53d6\u771f\u6b63\u6cbb\u7597\u7684\u8fc7\u7a0b\u4e2d\uff0c\u6211\u5e76\u4e0d\u5b64\u5355\u3002<\/p>\n

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

\u6211\u5e0c\u671b\u4eba\u4eec\u80fd\u66f4\u5e7f\u6cdb\u5730\u8ba4\u8bc6\u5230\u50cf LGMD \u8fd9\u6837\u7684\u75be\u75c5\u5bf9\u4e00\u4e2a\u4eba\u7684\u751f\u6d3b\u3001\u5fc3\u7406\u5065\u5eb7\u548c\u4eba\u751f\u671f\u671b\u7684\u5f71\u54cd\u3002 \u6211\u5e0c\u671b\u5176\u4ed6\u4eba\u80fd\u591f\u8ba4\u8bc6\u5230\u75be\u75c5\u53d1\u5c55\u7684\u4e25\u91cd\u6027\uff0c\u540c\u65f6\u4e5f\u8ba4\u8bc6\u5230\u6211\u4eec\u6240\u6709\u4eba\u90fd\u5fc5\u987b\u5728\u67d0\u4e00\u65f6\u523b\u52a0\u5165\u5230\u5bf9\u6297\u6162\u6027\u548c\u7f55\u89c1\u75be\u75c5\u7684\u6597\u4e89\u4e2d\u6765\u3002<\/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>?<\/p>\n

\u6211\u4f1a\u8df3\u4e0a\u8d8a\u91ce\u6469\u6258\u8f66\uff0c\u4e00\u9a91\u5c31\u662f\u597d\u51e0\u5929\uff01 \u6211\u5e74\u8f7b\u65f6\u7ecf\u5e38\u9a91\u8f66\uff0c\u4f46\u73b0\u5728\u4f53\u529b\u4e0d\u652f\u4e86\u3002 \u6211\u73b0\u5728\u6bcf\u5929\u8fd8\u5728\u60f3\u8fd9\u4ef6\u4e8b\u3002<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5636,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,66],"tags":[78],"class_list":["post-5635","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2j","tag-lgmd2j-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: John - 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\/2022\/02\/08\/individual-with-lgmd-john\/\" \/>\n<meta property=\"og:locale\" content=\"zh_CN\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: John - 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