{"id":5544,"date":"2021-10-17T02:17:57","date_gmt":"2021-10-17T02:17:57","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5544"},"modified":"2024-02-09T14:23:59","modified_gmt":"2024-02-09T14:23:59","slug":"individual-with-lgmd-jade","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/zh\/individuals-with-lgmd-interviews\/2021\/10\/17\/individual-with-lgmd-jade\/","title":{"rendered":"\u60a3\u6709 LGMD \u7684\u4e2a\u4eba\uff1a Jade"},"content":{"rendered":"

\"<\/p>\n

LGMD \"\u7126\u70b9\u8bbf\u8c08\"<\/strong><\/h3>\n

\u540d\u79f0<\/strong>: \u7389<\/p>\n

\u5e74\u9f84<\/strong>: 20 \u5c81<\/p>\n

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

LGMD \u5b50\u7c7b\u578b<\/strong>: LGMD 2A\/R1 \u4e0e\u9499\u86cb\u767d\u9176 3 \u6709\u5173<\/p>\n

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

\u6211\u662f\u5728 2021 \u5e74 3 \u6708\u88ab\u6b63\u5f0f\u786e\u8bca\u7684\uff0c\u6240\u4ee5\u8fd9\u4e00\u5207\u5bf9\u6211\u6765\u8bf4\u8fd8\u5f88\u964c\u751f\u3002<\/p>\n

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

\u7b2c\u4e00\u6b21\u53d1\u73b0\u75c7\u72b6\u65f6\uff0c\u6211\u4ee5\u4e3a\u81ea\u5df1\u53ea\u662f\u8131\u6c34\u4e86\u3002 \u6211\u611f\u5230\u6d51\u8eab\u65e0\u529b\uff0c\u53cc\u817f\u50cf\u679c\u51bb\u4e00\u6837\uff0c\u81c0\u90e8\u75bc\u75db\u3002 \u73b0\u5728\u6211\u77e5\u9053\u4e86\u81ea\u5df1\u7684\u8bca\u65ad\u7ed3\u679c\uff0c\u56de\u987e\u8fc7\u53bb\uff0c\u6211\u53ef\u4ee5\u770b\u5230\u65e9\u5728 12 \u5c81\u65f6\u5c31\u51fa\u73b0\u7684\u75c7\u72b6\u3002 \u6211\u6253\u8fc7\u5792\u7403\uff0c\u4f46\u65e0\u8bba\u6211\u600e\u4e48\u52aa\u529b\uff0c\u6211\u7684\u817f\u90fd\u8dd1\u4e0d\u5feb\u3002 \u6211\u7684\u5c0f\u817f\u4e5f\u603b\u662f\u5f02\u5e38\u7c97\u5927\uff0c\u4f46\u6211\u73b0\u5728\u77e5\u9053\u8fd9\u53ef\u80fd\u662f\u7531\u4e8e\u56db\u5934\u808c\u7f3a\u4e4f\u808c\u8089\u529b\u91cf\u9020\u6210\u7684\u3002<\/p>\n

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

\u4e0d\uff0c\u6211\u662f\u5bb6\u65cf\u4e2d\u552f\u4e00\u60a3\u6709 LGMD2A\/R1 \u7684\u4eba\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

\u697c\u68af\u963b\u788d\u4e86\u6211\u5f88\u591a\u4e8b\u60c5\u3002 \u6211\u8fd8\u80fd\u722c\u697c\u68af\uff0c\u4f46\u8981\u82b1\u8d39\u5f88\u591a\u7cbe\u529b\u548c\u4f53\u529b\u3002 \u8fd9\u4e0d\u503c\u5f97\u3002 \u6211\u8fd8\u5fc5\u987b\u5b66\u4f1a\u8c03\u6574\u6211\u7684\u65e5\u5e38\u751f\u6d3b\uff0c\u4f8b\u5982\uff0c\u505a\u996d\u65f6\u8981\u6709\u6905\u5b50\u5750\u7740\u4f11\u606f\uff0c\u62b1\u5b69\u5b50\u65f6\u8981\u5750\u5728\u5730\u4e0a\u800c\u4e0d\u662f\u62b1\u8d77\u6765\uff0c\u4ee5\u53ca\u9650\u5236\u6211\u4e00\u5929\u4e2d\u505a\u7684\u4e8b\u60c5\u7684\u6570\u91cf\u3002 \u6211\u6240\u7ecf\u5386\u7684\u6700\u5927\u969c\u788d\u662f\u5173\u4e8e\u7535\u52a8\u6905\u7684\u5fc3\u7406\u969c\u788d\u3002 \u6211\u77e5\u9053\u6211\u9700\u8981\u4f7f\u7528\u5b83\uff0c\u4f46\u6211\u7684\u5fc3\u7406\u969c\u788d\u8fd8\u6ca1\u6709\u88ab\u8bca\u65ad\u51fa\u6765\u3002<\/p>\n

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

\u6211\u7684\u4eba\u9645\u5173\u7cfb\u4ee5\u53ca\u5bf9\u751f\u6d3b\u7684\u79ef\u6781\u6001\u5ea6\u3002 \u6211\u5b8c\u6210\u4e86\u9ad8\u4e2d\u5b66\u4e1a\uff0c\u4f46\u4e4b\u540e\u53c8\u7ecf\u5386\u4e86\u8bca\u65ad\u7684\u9ebb\u70e6\uff0c\u6240\u4ee5\u8fd8\u6ca1\u6709\u4e0a\u5927\u5b66\uff0c\u4f46\u8fd9\u662f\u6211\u7684\u4e00\u4e2a\u76ee\u6807\u3002<\/p>\n

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

\u5b83\u8ba9\u6211\u66f4\u6709\u81ea\u6211\u610f\u8bc6\u548c\u81ea\u6211\u6559\u80b2\u7684\u80fd\u529b\u3002 \u6211\u73b0\u5728\u66f4\u4e86\u89e3\u81ea\u5df1\u7684\u8eab\u4f53\u4e86\uff0c\u6211\u80fd\u5206\u8fa8\u51fa\u81ea\u5df1\u662f\u5426\u5904\u4e8e\u6a2a\u7eb9\u808c\u6eb6\u89e3\u72b6\u6001\uff0c\u662f\u5426\u6b63\u5728\u51cf\u5c11\u8fd0\u52a8\u91cf\uff0c\u6216\u8005\u662f\u5426\u53ea\u9700\u8981\u4f11\u606f\u4e00\u4e0b\u3002 \u7531\u4e8e\u7f3a\u4e4f\u5bf9 LGMD \u7684\u7814\u7a76\uff0c\u6211\u9700\u8981\u8fdb\u884c\u5927\u91cf\u7684\u81ea\u6211\u6559\u80b2\u548c\u5ba3\u4f20\u3002 \u6211\u4f4f\u5728\u4e00\u4e2a\u534a\u519c\u6751\u793e\u533a\uff0c\u6240\u4ee5\u6ca1\u6709\u533b\u751f\u77e5\u9053\u8be5\u600e\u4e48\u6cbb\u7597\u6211\u6216\u6211\u5f97\u4e86\u4ec0\u4e48\u75c5\u3002 \u73b0\u5728\uff0c\u6211\u53ef\u4ee5\u6253\u7535\u8bdd\u7ed9\u6211\u7684\u521d\u7ea7\u4fdd\u5065\u533b\u751f\uff0c\u544a\u8bc9\u4ed6\u4eec\u6211\u7684\u75c5\u60c5\uff0c\u4ed6\u4eec\u4f1a\u7ed9\u6211\u76f8\u5e94\u7684\u6cbb\u7597\u3002<\/p>\n

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

LGMD \u5728\u6bcf\u4e2a\u4eba\u8eab\u4e0a\u7684\u8868\u73b0\u5e76\u4e0d\u76f8\u540c\u3002 \u4e0d\u662f\u6bcf\u4e2a\u4eba\u90fd\u80fd\u884c\u52a8\u81ea\u5982\uff0c\u4e5f\u4e0d\u662f\u6bcf\u4e2a\u4eba\u90fd\u4f1a\u5750\u5728\u8f6e\u6905\u4e0a\u3002 \u5c31\u50cf\u4e0d\u662f\u6bcf\u4e2a\u4eba\u90fd\u80fd\u5f97\u5230\u65e9\u671f\u8bca\u65ad\u4e00\u6837\uff0c\u6709\u4e9b\u4eba\u6c38\u8fdc\u4e5f\u5f97\u4e0d\u5230\u8bca\u65ad\uff08\u867d\u7136\u73b0\u5728\u5bb9\u6613\u591a\u4e86\uff09\u3002 \u4e0d\u662f\u6bcf\u4e2a\u4eba\u90fd\u80fd\u5f88\u597d\u5730\u63a5\u53d7\u8bca\u65ad\u5e76\u81ea\u4fe1\u5730\u5411\u524d\u8fc8\u8fdb\uff0c\u4e5f\u4e0d\u662f\u6bcf\u4e2a\u4eba\u90fd\u4f1a\u56e0\u4e3a\u8bca\u65ad\u800c\u4e00\u8e76\u4e0d\u632f\u3002 \u5343\u4e07\u4e0d\u8981\u4ee5\u4e3a\u81ea\u5df1\u4e86\u89e3\u522b\u4eba\u7684\u8eab\u5fc3\u7ecf\u5386\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\u60f3\u505a\u7684\u7b2c\u4e00\u4ef6\u4e8b\u5c31\u662f\u53bb\u5192\u9669\u5ea6\u5047\/\u516c\u8def\u65c5\u884c\u3002 \u867d\u7136\u73b0\u5728\u4e0d\u592a\u73b0\u5b9e\uff0c\u4f46\u6211\u4e00\u76f4\u60f3\u53bb\u5927\u5ce1\u8c37\u3001\u4f18\u80dc\u7f8e\u5730\u3001\u963f\u5df4\u62c9\u5951\u4e9a\u5c71\u8109\u6700\u9ad8\u70b9\u548c\u590f\u5a01\u5937\u706b\u5c71\u3002<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5545,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,82,16],"class_list":["post-5544","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","tag-lgmd2a-calpainopathy","tag-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Jade - 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\/2021\/10\/17\/individual-with-lgmd-jade\/\" \/>\n<meta property=\"og:locale\" content=\"zh_CN\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Jade - 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