{"id":414,"date":"2015-01-18T22:10:12","date_gmt":"2015-01-19T04:10:12","guid":{"rendered":"http:\/\/mainstay-bg.com\/wp\/?p=148"},"modified":"2015-01-18T22:10:12","modified_gmt":"2015-01-19T04:10:12","slug":"jessica","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/zh\/individuals-with-lgmd-interviews\/2015\/01\/18\/jessica\/","title":{"rendered":"\u60a3\u6709 LGMD \u7684\u4e2a\u4eba\uff1a \u6770\u897f\u5361"},"content":{"rendered":"<p>01\/18\/2015:<\/p>\n<p><span class=\"userContent\"><strong>\u59d3\u540d<\/strong>:\u6770\u897f\u5361\u00a0\u00a0\u00a0<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2015\/02\/LGMD2A-Jessica.png\"><img decoding=\"async\" class=\"lazyload  size-medium wp-image-149 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\/2015\/02\/LGMD2A-Jessica-300x169.png\" alt=\"LGMD2A - Jessica\" width=\"300\" height=\"169\" \/><\/a> <\/span><\/p>\n<p><span class=\"userContent\"><strong>\u5e74\u9f84<\/strong>: 31<br \/>\n<\/span><\/p>\n<p><span class=\"userContent\"><strong>\u56fd\u5bb6<\/strong>:\u7f8e\u56fd<br \/>\n<\/span><\/p>\n<p><span class=\"userContent\"><strong>LGMD \u5b50\u7c7b\u578b\uff1a<\/strong> LGMD2A \/ Calpainopathy<\/span><\/p>\n<p><span class=\"userContent\"><br \/>\n<\/span><span class=\"userContent\"><span class=\"text_exposed_show\"><strong>\u60a8\u5728\u51e0\u5c81\u65f6\u786e\u8bca<\/strong>:<\/span><\/span><br \/>\n<span class=\"userContent\"><span class=\"text_exposed_show\">\u00a0\u6211 12 \u5c81\u65f6\u88ab\u8bca\u65ad\u51fa\u60a3\u6709\u80a2\u8170\u808c\u8425\u517b\u4e0d\u826f\u75c7\uff0c\u4f46\u76f4\u5230 25 \u5c81\u5de6\u53f3\u624d\u88ab\u5206\u578b\u4e3a 2A \u578b\u3002<\/span><\/span><\/p>\n<p><strong>\u60a8\u6700\u521d\u7684\u75c7\u72b6\u662f\u4ec0\u4e48\uff1f<\/strong>:<br \/>\n\u6211\u4ece\u8fc8\u51fa\u7b2c\u4e00\u6b65\u5f00\u59cb\u5c31\u8868\u73b0\u51fa\u4e00\u4e9b\u811a\u8dbe\u8d70\u8def\u7684\u75c7\u72b6\uff0c\u4f46\u6211\u7684\u7236\u6bcd\u544a\u8bc9\u6211\u8fd9\u79cd\u75c7\u72b6\u4f1a\u6162\u6162\u6d88\u5931\u3002\u968f\u7740\u65f6\u95f4\u7684\u63a8\u79fb\uff0c\u7ad9\u7acb\u548c\u5e73\u8d70\u53d8\u5f97\u8d8a\u6765\u8d8a\u56f0\u96be\uff0c\u4f46\u6211\u5e76\u6ca1\u6709\u8868\u73b0\u51fa\u4efb\u4f55\u5176\u4ed6\u75c7\u72b6\uff0c\u76f4\u5230 8 \u5c81\u5de6\u53f3\uff0c\u6211\u624d\u5f00\u59cb\u5728\u4e0a\u697c\u68af\u3001\u8dd1\u6b65\u3001\u4f53\u80b2\u8bfe\u4e0a\u505a\u6d3b\u52a8\u4ee5\u53ca\u4ece\u5730\u677f\u4e0a\u7ad9\u8d77\u6765\u65f6\u9047\u5230\u4e00\u4e9b\u56f0\u96be\u3002<\/p>\n<p><strong>\u60a8\u662f\u5426\u6709\u5176\u4ed6\u5bb6\u5ead\u6210\u5458\u60a3\u6709 LGMD<\/strong>:<br \/>\n\u4e0d\uff0c\u6211\u662f\u6211\u4eec\u5bb6\u65cf\u4e2d\u552f\u4e00\u60a3\u6709\u808c\u8089\u840e\u7f29\u75c7\u7684\u4eba\u3002<\/p>\n<p><strong>\u60a8\u8ba4\u4e3a\u60a3\u6709 LGMD \u7684\u6700\u5927\u6311\u6218\u662f\u4ec0\u4e48\uff1f<\/strong>:<br \/>\n\u611f\u8c22\u4e0a\u5e1d\u7684\u6069\u5178\uff0c\u968f\u7740\u65f6\u95f4\u7684\u63a8\u79fb\uff0c\u6211\u5df2\u7ecf\u9010\u6e10\u63a5\u53d7\u5e76\u9002\u5e94\u4e86\u4e0e LGMD \u5171\u540c\u751f\u6d3b\u7684\u8bb8\u591a\u65b9\u9762\uff0c\u4f46\u6709\u4e00\u70b9\u6211\u4ecd\u5728\u82e6\u82e6\u6323\u624e\uff0c\u90a3\u5c31\u662f\u6211\u6e34\u671b\u66f4\u52a0\u72ec\u7acb\uff0c\u4f46\u53c8\u5fc5\u987b\u5728\u591a\u5927\u7a0b\u5ea6\u4e0a\u4f9d\u8d56\u4ed6\u4eba\u7684\u5e2e\u52a9\u624d\u80fd\u5b8c\u6210\u6b63\u5e38\u7684\u65e5\u5e38\u4efb\u52a1\u3002\u65e2\u60f3\u5b8c\u6210\u4efb\u52a1\uff0c\u53c8\u65e0\u6cd5\u5b8c\u6210\u4efb\u52a1\uff0c\u5c31\u50cf\u6709\u75d2\u5904\u5374\u65e0\u6cd5\u6293\u6320\u4e00\u6837\u3002\u8fd9\u5f80\u5f80\u9700\u8981\u6781\u5927\u7684\u8010\u5fc3\uff0c\u800c\u6211\u5f80\u5f80\u5f88\u96be\u505a\u5230\u3002\u66f4\u590d\u6742\u7684\u662f\uff0c\u6709\u65f6\u8fd8\u4f1a\u4ea7\u751f\u8d1f\u7f6a\u611f\u3002\u6211\u65e2\u8981\u9762\u5bf9\u81ea\u5df1\u4e0d\u65ad\u9700\u8981\u4ed6\u4eba\u5e2e\u52a9\u7684\u73b0\u5b9e\uff0c\u53c8\u8981\u9762\u5bf9\u90a3\u4e9b\u63d0\u4f9b\u62a4\u7406\u670d\u52a1\u7684\u4eba\u6709\u81ea\u5df1\u7684\u9700\u6c42\u3001\u613f\u671b\u3001\u8bae\u7a0b\u548c\u9650\u5236\uff0c\u6211\u5fc5\u987b\u6ce8\u610f\u5e76\u7406\u89e3\u4ed6\u4eec\u3002<\/p>\n<p><strong>\u60a8\u6700\u5927\u7684\u6210\u5c31\u662f\u4ec0\u4e48<\/strong>:<br \/>\n\u6211\u6700\u5927\u7684\u6210\u5c31\u662f\u5b8c\u6210\u4e86\u535a\u58eb\u5b66\u4f4d\u8bfe\u7a0b\uff0c\u5e76\u83b7\u5f97\u4e86\u4e34\u5e8a\u5fc3\u7406\u5b66\u535a\u58eb\u5b66\u4f4d\u3002<\/p>\n<p><strong>lgmd \u662f\u5982\u4f55\u5f71\u54cd\u4f60\u6210\u4e3a\u4eca\u5929\u7684\u81ea\u5df1\u7684\uff1f<\/strong>:<br \/>\n\u4e0a\u5e1d\u5728\u5f88\u591a\u65b9\u9762\u5229\u7528\u4e86\u6211\u4e0e MD \u7684\u751f\u6d3b\u3002\u7942\u8ba9\u6211\u77e5\u9053\u6211\u9700\u8981\u7942\uff0c\u8fd9\u6539\u53d8\u4e86\u6211\u7684\u4e00\u751f\u3002\u5c3d\u7ba1\u6211\u8eab\u5904\u56f0\u5883\uff0c\u4f46\u6211\u73b0\u5728\u62e5\u6709\u6301\u4e45\u7684\u5e73\u5b89\u548c\u559c\u4e50\u3002\"\u6211\u4eec\u8d8a\u662f\u611f\u5230\u865a\u5f31\uff0c\u5c31\u8d8a\u8981\u52aa\u529b\u3002\u6211\u4eec\u8d8a\u52aa\u529b\uff0c\u6211\u4eec\u7684\u7cbe\u795e\u5c31\u8d8a\u5f3a\u5927\uff0c\u5373\u4f7f\u6211\u4eec\u7684\u8eab\u4f53\u5728\u6d88\u7626\"\u3002(\u5e15\u514b\uff09\u4e0a\u5e1d\u8fd8\u5411\u6211\u5c55\u793a\u4e86\u8bb8\u591a\u5176\u4ed6\u7684\u795d\u798f\u3002\u6211\u53d8\u5f97\u80fd\u591f\u521b\u9020\u6027\u5730\u89e3\u51b3\u95ee\u9898\uff0c\u5b66\u4f1a\u4e86\u9002\u5e94\u53d8\u5316\u3002\u968f\u7740\u5e74\u9f84\u7684\u589e\u957f\uff0c\u6211\u628a\u6ce8\u610f\u529b\u4ece\u4f53\u80b2\u953b\u70bc\u8f6c\u79fb\u5230\u4e86\u52a0\u6df1\u4eba\u9645\u5173\u7cfb\u3001\u63a2\u7d22\u827a\u672f\u548c\u52aa\u529b\u5b66\u4e60\u4e0a\u3002\u6211\u4e0e\u8bb8\u591a\u7279\u6b8a\u7684\u6b8b\u75be\u4eba\u5efa\u7acb\u4e86\u7ec8\u751f\u53cb\u8c0a\u3002\u8fd9\u4e5f\u5f15\u5bfc\u6211\u5728\u6559\u80b2\u548c\u804c\u4e1a\u65b9\u9762\u7684\u8ffd\u6c42\uff0c\u5e0c\u671b\u80fd\u5e2e\u52a9\u4ed6\u4eba\u4ee5\u5065\u5eb7\u7684\u65b9\u5f0f\u5e94\u5bf9\u6b8b\u75be\u95ee\u9898\u3002<\/p>\n<p><strong>\u60a8\u5e0c\u671b\u4e16\u754c\u4e86\u89e3 LGMD \u7684\u54ea\u4e9b\u65b9\u9762\uff1f<\/strong>:LGMD \u662f\u4e00\u7ec4\u4e3b\u8981\u5f71\u54cd\u80a9\u90e8\u548c\u9aa8\u76c6\u8170\u90e8\u808c\u8089\u7684\u75be\u75c5\u3002\u76ee\u524d\u5df2\u786e\u5b9a\u7684 LGMD \u4e9a\u578b\u6709 20 \u591a\u79cd\u3002LGMD\u4f1a\u56e0\u5404\u79cd\u56e0\u7d20\u800c\u8868\u73b0\u51fa\u4e0d\u540c\u7684\u75c7\u72b6\uff0c\u5305\u62ec\u7279\u5b9a\u7684\u57fa\u56e0\u7a81\u53d8\u3001\u53d1\u75c5\u5e74\u9f84\u3001\u8fdb\u5c55\u901f\u5ea6\u7b49\u3002\u60a8\u751a\u81f3\u53ef\u80fd\u65e0\u6cd5\u5224\u65ad\u67d0\u4eba\u662f\u5426\u60a3\u6709 LGMD\u3002\u4f60\u53ef\u80fd\u4f1a\u770b\u5230\u53e6\u4e00\u4e2a\u4eba\uff0c\u8ba4\u4e3a\u4ed6\u4eec\u53ea\u662f\u8d70\u8def\u7684\u65b9\u5f0f\u4e0d\u540c\u6216\u901f\u5ea6\u8f83\u6162\u3002\u800c\u53e6\u4e00\u4e2a\u4eba\u5219\u53ef\u80fd\u9700\u8981\u957f\u671f\u4f7f\u7528\u8f6e\u6905\u3002\u5373\u4f7f\u662f\u4e24\u4e2a\u5177\u6709\u76f8\u540c\u4e9a\u578b\u7684\u4eba\uff0c\u8868\u73b0\u4e5f\u53ef\u80fd\u5b8c\u5168\u4e0d\u540c\u3002\u5c3d\u91cf\u4e0d\u8981\u5984\u52a0\u731c\u6d4b\uff0c\u5c24\u5176\u662f\u4e0d\u8981\u4ec5\u51ed\u81ea\u5df1\u7684\u6240\u89c1\u6240\u95fb\u3002\u6700\u91cd\u8981\u7684\u662f\uff0c\u6211\u60f3\u8ba9\u4e16\u4eba\u77e5\u9053\uff0cLGMD \u5e76\u4e0d\u662f\u4e00\u79cd\u60e9\u7f5a\uff0c\u4e5f\u4e0d\u662f\u503c\u5f97\u601c\u60af\u7684\u7406\u7531\uff0c\u66f4\u4e0d\u662f\u8ba4\u4e3a\u67d0\u4eba\u7684\u751f\u547d\u6ca1\u6709\u4efb\u4f55\u4ef7\u503c\u6216\u5feb\u4e50\u7684\u7406\u7531\u3002\u4e0a\u5e1d\u53ef\u4ee5\u800c\u4e14\u786e\u5b9e\u5728\u4f7f\u7528\u56f0\u96be\u7684\u7ecf\u5386\u3001\u8003\u9a8c\u548c\u75db\u82e6<\/p>\n<p><strong>\u5982\u679c\u660e\u5929\u5c31\u80fd \"\u6cbb\u6108 \"\u4f60\u7684\u8001\u5e74\u75f4\u5446\u75c7\uff0c\u4f60\u9996\u5148\u60f3\u505a\u7684\u662f\u4ec0\u4e48\uff1f<\/strong> \u6211\u60f3\u62b1\u8d77\u513f\u5b50\uff0c\u7d27\u7d27\u5730\u62b1\u7740\u4ed6\u8d70\u6765\u8d70\u53bb\u3002\u6211\u60f3\u548c\u4e08\u592b\u4e00\u8d77\u8df3\u821e\uff0c\u548c\u4ed6\u4e00\u8d77\u53c2\u52a0\u6237\u5916\/\u8fd0\u52a8\/\u953b\u70bc\u6d3b\u52a8\u3002\u6211\u4f1a\u60f3\u8dd1\u3001\u8df3\u3001\u8df3......\u5e76\u4e3a\u6b64\u8d5e\u7f8e\u4e0a\u5e1d\uff01<\/p>\n<p>&nbsp;<\/p>","protected":false},"excerpt":{"rendered":"<p>01\/18\/2015: NAME: Jessica\u00a0\u00a0\u00a0 AGE: 31 COUNTRY: United States LGMD Sub-Type: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":149,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,16],"class_list":["post-414","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","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>LGMD Spotlight Interview - Jessica<\/title>\n<meta name=\"description\" content=\"Jessica, who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares her experience in living with this progressive neuro-muscular disease.\" \/>\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\/2015\/01\/18\/jessica\/\" \/>\n<meta property=\"og:locale\" content=\"zh_CN\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - Jessica\" \/>\n<meta property=\"og:description\" content=\"Jessica, who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares her experience in living with this progressive neuro-muscular disease.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.lgmd-info.org\/zh\/individuals-with-lgmd-interviews\/2015\/01\/18\/jessica\/\" \/>\n<meta property=\"og:site_name\" content=\"LGMD Awareness Foundation\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/LGMDawareness\/\" \/>\n<meta property=\"article:published_time\" content=\"2015-01-19T04:10:12+00:00\" \/>\n<meta property=\"og:image\" 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