{"id":1382,"date":"2016-10-26T14:12:37","date_gmt":"2016-10-26T19:12:37","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1382"},"modified":"2016-10-26T14:12:37","modified_gmt":"2016-10-26T19:12:37","slug":"amie","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/zh\/individuals-with-lgmd-interviews\/2016\/10\/26\/amie\/","title":{"rendered":"\u60a3\u6709 LGMD \u7684\u4e2a\u4eba\uff1a Amie"},"content":{"rendered":"<p><strong>LGMD \"\u7126\u70b9\u8bbf\u8c08\"<\/strong><\/p>\n<p><strong>\u540d\u79f0<\/strong>:  \u963f\u7c73\u00a0 <strong>\u5e74\u9f84<\/strong>:31 \u5c81<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2016\/10\/LGMD2J-Amie.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1381 alignright\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27300%27%20height%3D%27169%27%20viewBox%3D%270%200%20300%20169%27%3E%3Crect%20width%3D%27300%27%20height%3D%27169%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2016\/10\/LGMD2J-Amie-300x169.png\" alt=\"lgmd2j-amie\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>\u56fd\u5bb6<\/strong>:\u7f8e\u56fd<\/p>\n<p><strong>LGMD \u5b50\u7c7b\u578b<\/strong>:  LGMD2J\uff08\u6ef4\u866b\u75c5\uff09<\/p>\n<p>&nbsp;<\/p>\n<p><strong>\u60a8\u5728\u51e0\u5c81\u65f6\u88ab\u786e\u8bca<\/strong>:<\/p>\n<p>\u6211\u5728 31 \u5c81\u65f6\u521a\u521a\u88ab\u8bca\u65ad\u51fa\u60a3\u6709 LGMD2J\uff08\u53c8\u79f0 Titinopathy\uff09\u3002<\/p>\n<p><strong>\u60a8\u6700\u521d\u7684\u75c7\u72b6\u662f\u4ec0\u4e48\uff1f<\/strong>:<\/p>\n<p>\u6211\u7684\u817f\u548c\u884c\u8d70\u4e00\u76f4\u6709\u95ee\u9898\uff0c\u4f46\u603b\u88ab\u544a\u77e5\u662f\u8ddf\u8171\u77ed\u9020\u6210\u7684\u3002\u5728\u505a\u4e86\u5ef6\u957f\u8ddf\u8171\u7684\u624b\u672f\u540e\uff0c\u6211\u7684\u5c0f\u817f\u840e\u7f29\u4e86\u3002\u6211\u7684\u6838\u5fc3\u808c\u8089\u4f3c\u4e4e\u5f88\u8584\u5f31\uff0c\u6211\u4e00\u76f4\u4ee5\u4e3a\u8fd9\u662f\u4e24\u6b21\u5256\u8179\u4ea7\u9020\u6210\u7684\u3002\u76f4\u5230\u4eca\u5e74\uff0c\u6211\u7684\u8eab\u4f53\u53d1\u751f\u4e86\u7ffb\u5929\u8986\u5730\u7684\u53d8\u5316\uff0c\u53d8\u5f97\u8f6f\u5f31\u65e0\u529b\uff0c\u6211\u518d\u4e5f\u4e0d\u80fd\u5ffd\u89c6\u5b83\u4e86\uff0c\u4e8e\u662f\u6211\u5f00\u59cb\u5bfb\u627e\u7b54\u6848\u3002<\/p>\n<p><strong>\u60a8\u662f\u5426\u6709\u5176\u4ed6\u5bb6\u5ead\u6210\u5458\u60a3\u6709 LGMD\uff1a<\/strong><\/p>\n<p>\u6ca1\u6709\u5df2\u77e5\u7684\u5bb6\u5ead\u6210\u5458\u60a3\u6709\u8fd9\u79cd\u75be\u75c5\u3002<\/p>\n<p><strong>\u60a8\u8ba4\u4e3a LGMD \u60a3\u8005\u5728\u751f\u6d3b\u4e2d\u9762\u4e34\u7684\u6700\u5927\u6311\u6218\u662f\u4ec0\u4e48\uff1f<\/strong>:<\/p>\n<p>\u6211\u7684 LGMD \u6709\u8bb8\u591a\u6311\u6218\u3002\u6211\u6bcf\u5929\u90fd\u5728 \"\u6b63\u5e38 \"\u7684\u65e5\u5e38\u6d3b\u52a8\u4e2d\u6323\u624e\uff1a\u8d70\u8fc7\u4e00\u4e2a\u623f\u95f4\u3001\u4ece\u5750\u59ff\u7ad9\u8d77\u6765\u3001\u4e0a\u53f0\u9636\u6216\u4e0a\u5761\u3001\u722c\u4e0a\u5361\u8f66\u3001\u5f2f\u8170\u3001\u5e73\u8861\u7b49\u7b49\u3002\u8fd9\u6709\u65f6\u4f1a\u4ee4\u4eba\u6cae\u4e27\u3002\u56e0\u4e3a\u6301\u7eed\u7684\u75bc\u75db\uff0c\u6211\u9519\u8fc7\u4e86\u5f88\u591a\u4e8b\u60c5\u3002\u5982\u679c\u6211\u505a\u7684\u4e8b\u60c5\u592a\u591a\uff08\u5176\u5b9e\u4e5f\u4e0d\u9700\u8981\u592a\u591a\uff09\uff0c\u5c31\u4f1a\u8ba9\u6211\u597d\u51e0\u5929\u90fd\u65e0\u6cd5\u5de5\u4f5c\u3002\u6211\u5fc5\u987b\u6311\u9009\u91cd\u8981\u548c\u4e0d\u91cd\u8981\u7684\u4e8b\u60c5\u3002\u6240\u6709\u8fd9\u4e00\u5207\u90fd\u4f1a\u5f71\u54cd\u5230\u6211\u7684\u5bb6\u4eba\u7684\u751f\u6d3b\uff0c\u800c\u6211\u4e5f\u4e3a\u6b64\u80cc\u4e0a\u4e86\u6c89\u91cd\u7684\u8d1f\u62c5\u3002LGMD \u786e\u5b9e\u593a\u8d70\u4e86\u6211\u7684\u4e00\u4e9b\u81ea\u7531\uff0c\u8fd9\u8ba9\u6211\u96be\u4ee5\u627f\u53d7\uff0c\u4f46\u6211\u52aa\u529b\u4fdd\u6301\u79ef\u6781\u7684\u5fc3\u6001\uff01<\/p>\n<p><strong>\u60a8\u6700\u5927\u7684\u6210\u5c31\u662f\u4ec0\u4e48\uff1f<\/strong>:<\/p>\n<p>\u4f5c\u4e3a\u6bcd\u4eb2\u3001\u59bb\u5b50\u548c\u59d0\u59b9\uff0c\u662f\u6211\u6700\u5927\u7684\u6210\u5c31\uff01\u6211\u6709\u4e24\u4e2a\u6f02\u4eae\u7684\u5973\u513f\u3001\u4e00\u4e2a\u51fa\u8272\u7684\u4e08\u592b\u548c\u6700\u652f\u6301\u6211\u7684\u5bb6\u4eba\u3002\u6b63\u662f\u56e0\u4e3a\u6709\u4e86\u4ed6\u4eec\uff0c\u6211\u624d\u80fd\u4fdd\u6301\u4e50\u89c2\uff0c\"\u50cf\u5973\u5b69\u4e00\u6837\u594b\u6597\"\uff01\u6211\u4e00\u751f\u7684\u613f\u671b\u5c31\u662f\u6210\u4e3a\u4e00\u540d\u6bcd\u4eb2\uff0c\u62e5\u6709\u4e00\u4e2a\u6e29\u99a8\u7684\u5bb6\u5ead\uff01\u6211\u771f\u7684\u5f88\u5e78\u8fd0\uff01<\/p>\n<p><strong>LGMD \u662f\u5982\u4f55\u5f71\u54cd\u60a8\u6210\u4e3a\u4eca\u5929\u7684\u81ea\u5df1\u7684\uff1f<\/strong><\/p>\n<p>\u867d\u7136\u6211\u7684\u8bca\u65ad\u7ed3\u679c\u5f88\u65b0\uff0c\u4f46\u6211\u5185\u5fc3\u6df1\u5904\u4e00\u76f4\u77e5\u9053\u51fa\u4e86\u95ee\u9898\u3002\u5b9e\u9645\u4e0a\uff0c\u5728\u5f97\u5230\u795e\u7ecf\u79d1\u533b\u751f\u7684\u8bca\u65ad\u4e4b\u524d\uff0c\u6211\u5c31\u81ea\u6211\u8bca\u65ad\u4e3a LGMD\u3002\u56e0\u6b64\uff0c\u5f53\u68c0\u67e5\u7ed3\u679c\u51fa\u6765\u65f6\uff0c\u6211\u611f\u5230\u4e00\u79cd\u5c34\u5c2c\u7684\u559c\u60a6\u3002\u6211\u7ec8\u4e8e\u6709\u4e86\u8bca\u65ad\u7ed3\u679c\uff01\u6211\u89c9\u5f97\u6211\u5f97\u8fd9\u79cd\u75c5\u662f\u6709\u539f\u56e0\u7684\uff0c\u4f46\u6211\u8fd8\u6ca1\u6709\u627e\u5230\u7b54\u6848\u3002\u6211\u771f\u7684\u76f8\u4fe1\u6240\u6709\u4e8b\u60c5\u7684\u53d1\u751f\u90fd\u662f\u6709\u539f\u56e0\u7684\uff0c\u65f6\u673a\u5c31\u662f\u4e00\u5207\u3002LGMD \u662f\u4e00\u79cd\u7f55\u89c1\u7684\u75be\u75c5\uff0c\u5728\u6211\u6240\u5728\u7684\u5730\u533a\u80af\u5b9a\u4e0d\u4e3a\u4eba\u77e5\uff0c\u6240\u4ee5\u6211\u8981\u5c3d\u53ef\u80fd\u591a\u5730\u8fdb\u884c\u7814\u7a76\uff0c\u5e76\u5411\u5c3d\u53ef\u80fd\u591a\u7684\u4eba\u8fdb\u884c\u5ba3\u4f20\u3002\u6211\u77e5\u9053\u6211\u5f88\u575a\u5f3a\uff0c\u5c3d\u7ba1\u6211\u7684\u808c\u8089\u5e76\u4e0d\u5f3a\u58ee\u3002\u6211\u4eab\u53d7\u751f\u6d3b\u4e2d\u7684\u70b9\u70b9\u6ef4\u6ef4\uff0c\u6d3b\u5728\u5f53\u4e0b\uff01\u6211\u4e5f\u4f1a\u5728\u4efb\u4f55\u60c5\u51b5\u4e0b\u5bfb\u6c42\u79ef\u6781\u7684\u4e00\u9762\u3002\u4eba\u751f\u82e6\u77ed\uff0c\u4e0d\u80fd\u53ea\u5173\u6ce8\u8d1f\u9762\uff01<\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p><strong>\u60a8\u5e0c\u671b\u4e16\u754c\u4e86\u89e3 LGMD \u7684\u54ea\u4e9b\u65b9\u9762\uff1f<\/strong>:<\/p>\n<p>\u6211\u60f3\u8ba9\u5168\u4e16\u754c\u77e5\u9053\uff0c\u6bcf 4.3 \u4e07\u4eba\u4e2d\u5c31\u6709 1 \u4eba\u60a3\u6709\u80a2\u8170\u808c\u8425\u517b\u4e0d\u826f\u75c7\u3002\u4e0d\u5e78\u7684\u662f\uff0c\u8fd9\u79cd\u75be\u75c5\u8fd8\u6ca1\u6709\u6cbb\u6108\u7684\u65b9\u6cd5\u3002  \u7531\u4e8e\u5b83\u7684\u7f55\u89c1\u6027\uff0c\u7528\u4e8e\u7814\u7a76\u7684\u8d44\u91d1\u8f83\u5c11\uff0c\u8fd9\u4f7f\u5f97\u6211\u79bb\u83b7\u5f97\u6cbb\u6108\u66f4\u8fdb\u4e00\u6b65\u3002\u80a2\u8170\u808c\u8425\u517b\u4e0d\u826f\u75c7\u4f1a\u6f5c\u5165\u4efb\u4f55\u4e00\u4e2a\u5bb6\u5ead\uff0c\u6bcf\u5929\u90fd\u5728\u5f71\u54cd\u7740\u4eba\u4eec\u7684\u751f\u6d3b\u3002\u6211\u9884\u8ba1\u8fd9\u79cd\u75be\u75c5\u6700\u7ec8\u4f1a\u593a\u8d70\u6211\u7684\u884c\u8d70\u80fd\u529b\uff0c\u4f46\u6211\u4f1a\u5c3d\u6211\u6240\u80fd\u4e0e\u4e4b\u6297\u4e89\uff01<\/p>\n<p><strong>\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<p>\u4ece\u54ea\u91cc\u5f00\u59cb\uff1f\u6211\u4f1a\u5e26\u5973\u513f\u4eec\u53bb\u8fea\u65af\u5c3c\u4e16\u754c\uff0c\u7136\u540e\u53bb\u79d1\u7f57\u62c9\u591a\u8fdc\u8db3\uff01\u6211\u4f1a\u8d70\u697c\u68af\uff0c\u56e0\u4e3a\u6211\u53ef\u4ee5\uff01\u6211\u6000\u5ff5\u4ee5\u524d\u505a\u7684\u90a3\u4e9b\u5c0f\u4e8b\uff0c\u6bd4\u5982\u8d2d\u7269\u3001\u8df3\u821e\u751a\u81f3\u6d17\u6fa1\uff01\u76f4\u5230\u5931\u53bb\u81ea\u7531\uff0c\u4f60\u624d\u4f1a\u610f\u8bc6\u5230\u81ea\u5df1\u5931\u53bb\u4e86\u4ec0\u4e48\uff01<\/p>\n<p>&nbsp;<\/p>\n<p>\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 <a href=\"https:\/\/www.lgmd-info.org\/zh\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name:\u00a0 Amie\u00a0 Age: 31 yrs old Country: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1381,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,66],"tags":[68,16],"class_list":["post-1382","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2j","tag-lgmd2j-titinopathy","tag-united-states"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>INDIVIDUAL WITH LGMD: Amie - LGMD Awareness Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, 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