{"id":1580,"date":"2017-09-22T12:01:04","date_gmt":"2017-09-22T17:01:04","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1580"},"modified":"2017-09-22T12:01:04","modified_gmt":"2017-09-22T17:01:04","slug":"hillary","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/zh\/individuals-with-lgmd-interviews\/2017\/09\/22\/hillary\/","title":{"rendered":"\u60a3\u6709 LGMD \u7684\u4e2a\u4eba\uff1a \u5e0c\u62c9\u91cc"},"content":{"rendered":"<p><span style=\"color: #000000;\"><strong>LGMD \"\u7126\u70b9\u8bbf\u8c08\"<\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>\u540d\u79f0\uff1a<\/strong>\u00a0 \u5e0c\u62c9\u91cc \u00a0\u00a0<strong>\u5e74\u9f84<\/strong>\u00a0 32 \u5c81<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2017\/09\/LGMD2A-Hillary-K.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1579 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\/2017\/09\/LGMD2A-Hillary-K-300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>\u56fd\u5bb6\uff1a<\/strong>\u00a0 \u7f8e\u56fd<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>LGMD \u5b50\u7c7b\u578b\uff1a<\/strong>\u00a0 LGMD2A \/ Calpainopathy<\/span><!--more--><\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"color: #000000;\"><strong>\u60a8\u5728\u51e0\u5c81\u65f6\u88ab\u786e\u8bca<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">\u6211\u5728 13 \u5c81\u65f6\u88ab\u786e\u8bca\u3002<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>\u60a8\u6700\u521d\u7684\u75c7\u72b6\u662f\u4ec0\u4e48\uff1f<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">\u6211\u6700\u521d\u7684\u75c7\u72b6\u662f\u8ddf\u8171\u7d27\u7ef7\u3001\u8db3\u5f13\u8fc7\u9ad8\u548c\u8dd1\u6b65\u7f13\u6162\u3002\u6211\u5f00\u59cb\u50cf\u6211\u7684\u54e5\u54e5\u4e00\u6837\u8dd1\u6b65\uff0c\u4ed6\u4e0e\u6211\u540c\u65f6\u88ab\u8bca\u65ad\u51fa\u60a3\u6709 LGMD2A\u3002<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>\u60a8\u662f\u5426\u6709\u5176\u4ed6\u5bb6\u5ead\u6210\u5458\u60a3\u6709 LGMD\uff1a<\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\">\u662f\u7684\uff0c\u6211\u7684\u54e5\u54e5\uff08\u5927\u6211 5 \u5c81\uff09\u4e5f\u60a3\u6709 LGMD2A\u3002<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>\u60a8\u8ba4\u4e3a LGMD \u60a3\u8005\u5728\u751f\u6d3b\u4e2d\u9762\u4e34\u7684\u6700\u5927\u6311\u6218\u662f\u4ec0\u4e48\uff1f<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">LGMD2A \u6700\u96be\u7684\u5730\u65b9\u5728\u4e8e\u5b83\u7684\u4e0d\u65ad\u53d8\u5316\u3002\u5728\u8fc7\u53bb\u7684 20 \u5e74\u91cc\uff0c\u6211\u60f3\u51fa\u4e86\u5404\u79cd\u521b\u9020\u6027\u7684\u65b9\u6cd5\u6765\u5b8c\u6210\u65e5\u5e38\u4efb\u52a1\u3002\u50cf\u72ec\u7acb\u53bb\u6d17\u624b\u95f4\u8fd9\u6837\u7b80\u5355\u7684\u4efb\u52a1\uff0c\u90fd\u9700\u8981\u8c03\u6574\u548c\u91cd\u65b0\u521b\u9020\u5f88\u591a\u6b21\u3002\u6709\u4e00\u6b21\uff0c\u6211\u7528\u524d\u81c2\u3001\u524d\u989d\u548c\u6276\u624b\u4ece\u9a6c\u6876\u4e0a\u7684\u5750\u59ff\u722c\u4e0a\u5899\u3002\u7531\u4e8e\u75be\u75c5\u5728\u4e0d\u65ad\u53d8\u5316\uff0c\u6211\u7684\u53d8\u901a\u65b9\u6cd5\u548c \"\u89e3\u51b3\u65b9\u6848 \"\u53ea\u80fd\u7ba1\u7528\u51e0\u5e74\uff0c\u7136\u540e\u6211\u53c8\u8981\u56de\u5230\u7ed8\u56fe\u677f\u4e0a\u60f3\u51fa\u65b0\u7684\u529e\u6cd5\u3002<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>\u60a8\u6700\u5927\u7684\u6210\u5c31\u662f\u4ec0\u4e48\uff1f<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">\u5bb6\u5ead\u662f\u6211\u6700\u5927\u7684\u6210\u5c31\u3002\u6211 23 \u5c81\u7ed3\u5a5a\uff0c\u5f53\u65f6\u6211\u8fd8\u662f\u4e00\u4e2a\u975e\u5e38\u5065\u5168\u7684\u4eba\u3002\u5728\u77ed\u77ed\u7684 9 \u5e74\u65f6\u95f4\u91cc\uff0c\u6211\u73b0\u5728\u6210\u4e86\u4e00\u540d\u5168\u804c\u8f6e\u6905\u4f7f\u7528\u8005\u3002\u6211\u548c\u4e08\u592b\u6709\u5e78\u9886\u517b\u4e86\u4e24\u4e2a\u6f02\u4eae\u7684\u5b69\u5b50\u3002\u6211\u7684\u4e08\u592b\u548c\u4e24\u4e2a\u5b69\u5b50\u5c31\u662f\u6211\u7684\u4e00\u5207\u3002\u751f\u6d3b\u5e76\u4e0d\u603b\u662f\u4e00\u5e06\u98ce\u987a\uff0c\u4f46\u6709\u8fd9\u4e09\u4e2a\u5b69\u5b50\u5728\u6211\u8eab\u8fb9\uff08\u6216\u5728\u6211\u817f\u4e0a\uff09\uff0c\u6211\u5c31\u4f1a\u60f3\u8d77\u751f\u6d3b\u662f\u591a\u4e48\u7f8e\u597d\u3002\u521a\u786e\u8bca\u65f6\uff0c\u6211\u603b\u662f\u62c5\u5fc3\u5982\u4f55\u8ffd\u8d76\u6211\u7684\u5b69\u5b50\u4eec\uff0c\u6216\u628a\u4ed6\u4eec\u4ece\u8dd1\u5230\u8857\u4e0a\u7684\u8def\u4e0a\u6551\u51fa\u6765\u3002\u6211\u4ece\u672a\u60f3\u8c61\u8fc7\u81ea\u5df1\u5750\u5728\u8f6e\u6905\u4e0a\u8ffd\u8d76\u4ed6\u4eec\u7684\u60c5\u666f\uff01\u4f60\u77e5\u9053\u8f6e\u6905\u7684\u5de1\u822a\u901f\u5ea6\u53ef\u4ee5\u8fbe\u5230\u6bcf\u5c0f\u65f6 7 \u82f1\u91cc\u5417\uff1f\u4e8b\u5b9e\u8bc1\u660e\uff0c\u6211\u6839\u672c\u4e0d\u7528\u62c5\u5fc3\u3002\u6211\u53ef\u4ee5\u5728\u5bb6\u517c\u804c\u5de5\u4f5c\uff0c\u540c\u65f6\u517c\u987e\u59bb\u5b50\u548c\u6bcd\u4eb2\u7684\u8d23\u4efb\u3002<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>LGMD \u662f\u5982\u4f55\u5f71\u54cd\u60a8\u6210\u4e3a\u4eca\u5929\u7684\u81ea\u5df1\u7684\uff1f<\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\">\u6211 13 \u5c81\u65f6\u5c31\u5f00\u59cb\u6253\u7bee\u7403\u3001\u6392\u7403\u548c\u5792\u7403\u3002\u4f53\u80b2\u662f\u6211\u7684\u4e00\u5207\u3002\u53ef\u4ee5\u60f3\u8c61\uff0c\u8bca\u65ad\u7ed3\u679c\u8ba9\u6211\u5927\u5403\u4e00\u60ca\uff0c\u6709\u4e00\u6bb5\u65f6\u95f4\u6211\u8fd8\u5728\u5426\u8ba4\u3002\u5728\u53c2\u52a0\u6392\u7403\u9752\u5e74\u961f\u7684\u9009\u62d4\u8d5b\u65f6\uff0c\u6211\u88ab\u6559\u7ec3\u8ba4\u4e3a\u6211\u8ddf\u4e0d\u4e0a\u4ed6\u4eec\u7684\u8282\u594f\u800c\u5b8c\u5168\u9707\u60ca\u4e86\u3002\u4ed6\u4eec\u51b3\u5b9a\u8ba9\u6211\u4e0a\u573a\uff0c\u4f46\u5728\u8d5b\u5b63\u7ed3\u675f\u65f6\uff0c\u6211\u5df2\u7ecf\u63a5\u53d7\u4e86\u81ea\u5df1\u4e0d\u5982\u961f\u53cb\u5feb\u7684\u4e8b\u5b9e\u3002\u8fd9\u7ed9\u4e86\u6211\u5f88\u5927\u7684\u7cbe\u795e\u6253\u51fb\u3002\u5e78\u8fd0\u7684\u662f\uff0c\u5728\u7236\u6bcd\u548c\u670b\u53cb\u7684\u5f71\u54cd\u4e0b\uff0c\u6211\u51b3\u5b9a\u5c1d\u8bd5\u65b0\u4e8b\u7269\uff0c\u6211\u53c2\u52a0\u4e86\u5b66\u751f\u4f1a\u7ade\u9009\uff0c\u8fd8\u62c5\u4efb\u4e86\u5e74\u9274\u7f16\u8f91\u3002\u5fd9\u788c\u7684\u751f\u6d3b\u8ba9\u6211\u627e\u5230\u4e86\u81ea\u5df1\u559c\u6b22\u7684\u65b0\u4e8b\u7269\u3002\u6211\u7684\u7ecf\u5386\u548c\u673a\u4f1a\u5e2e\u52a9\u6211\u83b7\u5f97\u4e86\u5927\u5b66\u5956\u5b66\u91d1\uff0c\u5e76\u5728\u5927\u5b66\u6821\u56ed\u91cc\u83b7\u5f97\u4e86\u66f4\u591a\u7684\u9886\u5bfc\u673a\u4f1a\u3002\u6b64\u5916\uff0c\u5728\u8fc7\u53bb\u7684 14 \u5e74\u91cc\uff0c\u6211\u6709\u673a\u4f1a\u5728\u9152\u5e97\u4e1a\u5de5\u4f5c\uff0c\u73b0\u5728\u6211\u6709\u4e00\u4e2a\u53ef\u4ee5\u5728\u5bb6\u5de5\u4f5c\u7684\u804c\u4f4d\u3002\u4fdd\u6301\u5fd9\u788c\u4e00\u76f4\u662f\u6211\u5fc3\u7406\u5065\u5eb7\u7684\u6700\u4f73\u826f\u836f\u4e4b\u4e00\uff0c\u8001\u5b9e\u8bf4\uff0c\u6211\u4e0d\u8bb0\u5f97\u81ea\u5df1\u6709\u591a\u4e45\u6ca1\u6709\u5fd9\u788c\u8fc7\u4e86\uff01<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>\u60a8\u5e0c\u671b\u4e16\u754c\u4e86\u89e3 LGMD \u7684\u54ea\u4e9b\u65b9\u9762\uff1f<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">\u63d0\u9ad8\u4eba\u4eec\u5bf9\u7f55\u89c1\u75be\u75c5\u7684\u8ba4\u8bc6\u7edd\u975e\u6613\u4e8b\u3002\u5f53\u60a8\u770b\u5230\u6d88\u9632\u5458\u5728 \"\u586b\u6ee1\u9774\u5b50 \"\u6d3b\u52a8\u4e2d\uff0c\u6216\u770b\u5230\u4e09\u53f6\u8349\u5728\u5f53\u5730\u4f01\u4e1a\u4e2d\uff0c\u8bf7\u7ee7\u7eed\u6350\u6b3e\u3002\u8fd9\u4e9b\u94b1\u6709\u52a9\u4e8e\u8fdb\u4e00\u6b65\u7684\u7814\u7a76\uff0c\u4e5f\u6709\u52a9\u4e8e\u9001\u5b69\u5b50\u4eec\u53c2\u52a0 MDA \u590f\u4ee4\u8425\u3002\u6211\u5e0c\u671b\u4eca\u5929\u6b63\u5728\u8fdb\u884c\u7684\u7814\u7a76\u80fd\u591f\u6539\u53d8\u4eba\u4eec\u7684\u751f\u6d3b\u3002<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>\u5982\u679c\u60a8\u7684 LGMD \u660e\u5929\u5c31\u80fd \"\u6cbb\u6108\"\uff0c\u60a8\u9996\u5148\u60f3\u505a\u7684\u662f\u4ec0\u4e48\uff1f<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">\u6211\u505a\u7684\u7b2c\u4e00\u4ef6\u4e8b\u5c31\u662f\u8ffd\u7740\u6211\u7684\u5b69\u5b50\u4eec\uff0c\u628a\u4ed6\u4eec\u629b\u5411\u7a7a\u4e2d\uff0c\u4e00\u76f4\u73a9\u5230\u5934\u6655\u76ee\u7729\uff01<\/span><\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"color: #000000;\">* * * \u6b32\u4e86\u89e3\u66f4\u591a \"LGMD \u805a\u7126\u8bbf\u8c08 \"\u6216\u81ea\u613f\u53c2\u52a0\u5373\u5c06\u4e3e\u884c\u7684\u8bbf\u8c08\uff0c\u8bf7\u8bbf\u95ee\u6211\u4eec\u7684\u7f51\u7ad9<\/span> \u00a0<a href=\"https:\/\/www.lgmd-info.org\/zh\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>\n<p>&nbsp;<\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSPOTLIGHT INTERVIEW\u201d NAME:\u00a0 Hillary \u00a0\u00a0AGE:\u00a0 32 yrs. old COUNTRY:\u00a0 [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1579,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-1580","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a-calpainopathy-united-states"],"acf":[],"yoast_head":"<!-- This site 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