{"id":1047,"date":"2015-11-06T10:43:55","date_gmt":"2015-11-06T16:43:55","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1047"},"modified":"2015-11-06T10:43:55","modified_gmt":"2015-11-06T16:43:55","slug":"siri","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/zh\/individuals-with-lgmd-interviews\/2015\/11\/06\/siri\/","title":{"rendered":"\u60a3\u6709 LGMD \u7684\u4e2a\u4eba\uff1a Siri"},"content":{"rendered":"<p><strong>11\/06\/2015<\/strong><\/p>\n<p><strong>\u59d3\u540d<\/strong>:  Siri\u00a0 <strong>\u5e74\u9f84<\/strong>: 28 \u5c81<\/p>\n<p><strong>\u56fd\u5bb6<\/strong>:  \u632a\u5a01<\/p>\n<p><strong>LGMD \u5b50\u7c7b\u578b<\/strong>:LGMD2A \/ Calpainopathy<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2015\/11\/LGMD2A-Siri.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1048 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\/11\/LGMD2A-Siri-300x169.png\" alt=\"LGMD2A - Siri\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p>&nbsp;<\/p>\n<p><strong>\u60a8\u5728\u51e0\u5c81\u65f6\u88ab\u786e\u8bca<\/strong>:<\/p>\n<p>\u6211\u662f\u5728 26 \u5c81\u65f6\u88ab\u8bca\u65ad\u51fa\u6765\u7684\u3002<\/p>\n<p><strong>\u60a8\u6700\u521d\u7684\u75c7\u72b6\u662f\u4ec0\u4e48\uff1f<\/strong>:<\/p>\n<p>\u6211\u4ece 16 \u5c81\u5f00\u59cb\u51fa\u73b0\u4e0d\u660e\u539f\u56e0\u7684\u75b2\u52b3\u300219 \u5c81\u90a3\u5e74\uff0c\u6211\u53d1\u73b0\u81ea\u5df1\u5f88\u96be\u628a\u81ea\u5df1\u7684<\/p>\n<p>\u53f3\u81c2\u4e3e\u8fc7\u5934\u9876\u300220 \u5c81\u51fa\u5934\u65f6\uff0c\u6211\u7684\u811a\u540e\u8ddf\u7ef3\u5f00\u59cb\u51fa\u73b0\u95ee\u9898\uff0c\u8d85\u7ea7\u7d27\u3002\u51e0\u5e74\u540e<\/p>\n<p>\u540e\u6765\uff0c\u6211\u5f00\u59cb\u5728\u697c\u68af\u548c\u4f4e\u77ee\u7684\u5ea7\u4f4d\u4e0a\u6323\u624e\uff0c\u518d\u4e5f\u4e0d\u80fd\u8dd1\u6216\u8df3\u4e86\u3002<\/p>\n<p><strong>\u60a8\u662f\u5426\u6709\u5176\u4ed6\u5bb6\u5ead\u6210\u5458\u60a3\u6709 LGMD\uff1a<\/strong><\/p>\n<p>\u4e0d\uff0c\u6211\u662f\u5bb6\u65cf\u4e2d\u552f\u4e00\u60a3\u6709 LGMD2A \u7684\u6210\u5458\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>\u6709\u4e9b\u65f6\u5019\uff0c\u4eba\u4eec\u8ba4\u4e3a\u7406\u6240\u5f53\u7136\u7684\u65e5\u5e38\u5de5\u4f5c\u8ba9\u6211\u975e\u5e38\u6cae\u4e27\u3002\u6bd4\u5982\u4ece<\/p>\n<p>\u6905\u5b50\u3001\u5728\u5e8a\u4e0a\u7ffb\u8eab\u6216\u7cfb\u978b\u5e26\uff0c\u6240\u6709\u8fd9\u4e9b\u5c0f\u4e8b\u90fd\u4f1a\u8ba9\u6211\u611f\u5230\u75b2\u5026\uff0c\u6211\u4e0d\u559c\u6b22\u6d6a\u8d39\u65f6\u95f4\u3002<\/p>\n<p>\u7cbe\u529b\u3002\u4f46\u771f\u6b63\u7684\u6323\u624e\u662f\u6b8b\u75be\u6240\u5e26\u6765\u7684\u6240\u6709\u989d\u5916\u5de5\u4f5c\u3002\u4eba\u4eec\u6ca1\u6709\u770b\u5230<\/p>\n<p>\u6211\u82b1\u5728\u529e\u7406\u624b\u7eed\u3001\u83b7\u53d6\u6240\u9700\u7269\u54c1\u3001\u4e86\u89e3\u81ea\u5df1\u7684\u6743\u5229\u3001\u7406\u7597\u3001\u9884\u7ea6\u533b\u751f\u7b49\u65b9\u9762\u7684\u65f6\u95f4\uff0c\u6216\u8005\u6211\u56e0\u4e3a\u67d0\u5929\u8fc7\u5ea6\u52b3\u7d2f\u800c \"\u6d6a\u8d39 \"\u7684\u4f11\u606f\u65f6\u95f4\u3002\u4f9d\u8d56\u4ed6\u4eba\u4e5f\u662f\u4e00\u79cd\u6311\u6218\u3002<\/p>\n<p><strong>\u60a8\u6700\u5927\u7684\u6210\u5c31\u662f\u4ec0\u4e48\uff1f<\/strong>:<\/p>\n<p>\u6211\u5b8c\u6210\u4e86 6 \u5e74\u7684\u5927\u5b66\u5b66\u4e1a\uff0c\u83b7\u5f97\u4e86\u6559\u5e08\u5b66\u4f4d\u3002\u6211\u8fd8\u8bbf\u95ee\u8fc7\u8bb8\u591a\u4e0d\u540c\u7684<\/p>\n<p>\u5c3d\u7ba1\u6211\u5f88\u52aa\u529b\uff0c\u4f46\u6211\u8fd8\u662f\u53bb\u8fc7\u5f88\u591a\u56fd\u5bb6\uff0c\u5f92\u6b65\u722c\u8fc7\u5f88\u591a\u5c71\u3002<\/p>\n<p><strong>LGMD \u662f\u5982\u4f55\u5f71\u54cd\u60a8\u6210\u4e3a\u4eca\u5929\u7684\u81ea\u5df1\u7684\uff1f<\/strong><\/p>\n<p>\u5b83\u6559\u4f1a\u6211\u4e0d\u8981\u628a\u4efb\u4f55\u4e8b\u60c5\u89c6\u4e3a\u7406\u6240\u5f53\u7136\u3002\u5b83\u8ba9\u6211\u53d8\u5f97\u66f4\u52a0\u8c26\u900a\uff0c\u5bf9\u751f\u6d3b\u4e2d\u7684\u6240\u6709\u5c0f\u4e8b\u90fd\u5fc3\u5b58\u611f\u6fc0\u3002\u5b83\u8ba9\u6211\u5b66\u4f1a\u653e\u6162\u811a\u6b65\uff0c\u66f4\u6709\u8010\u5fc3\uff0c\u6562\u4e8e\u5728\u5c0f\u4e8b\u4e0a\u5bfb\u6c42\u5e2e\u52a9\u3002  \u4eab\u53d7\u6bcf\u4e00\u5929\uff01\u5b83\u8fd8\u8ba9\u6211\u53d8\u5f97\u66f4\u6709\u521b\u9020\u529b\uff0c\u56e0\u4e3a\u6211\u5fc5\u987b\u627e\u5230\u65b0\u7684\u65b9\u6cd5\u6765\u505a\u4e8b\u3002\u6211\u8fd8\u8ba4\u8bc6\u4e86\u5f88\u591a\u65b0\u670b\u53cb\uff01\u6211\u559c\u6b22\u8fd9\u6837\u3002<\/p>\n<p><strong>\u60a8\u5e0c\u671b\u4e16\u754c\u4e86\u89e3 LGMD \u7684\u54ea\u4e9b\u65b9\u9762\uff1f<\/strong>:<\/p>\n<p>\u5b83\u786e\u5b9e\u5b58\u5728\u662f\u4e00\u4e2a\u826f\u597d\u7684\u5f00\u7aef\uff01\u5b83\u4ee5\u4e0d\u540c\u7684\u65b9\u5f0f\u5f71\u54cd\u7740\u4eba\u4eec\uff0c\u4f46\u5bf9\u6211\u4eec\u5927\u591a\u6570\u4eba\u6765\u8bf4\uff0c\u5b83\u662f<\/p>\n<p>\u968f\u7740\u65f6\u95f4\u7684\u63a8\u79fb\uff0c\u80fd\u529b\u4f1a\u9010\u6e10\u4e27\u5931\uff0c\u8fd9\u8ba9\u4eba\u975e\u5e38\u6cae\u4e27\u548c\u90c1\u95f7\u3002\u6211\u4eec\u4e00\u76f4\u5728\u5904\u7406\u8fd9\u4e2a\u95ee\u9898\uff0c\u56e0\u4e3a\u5b83\u662f\u4e00\u79cd<\/p>\n<p>\u6e10\u8fdb\u6027\u75be\u75c5\u3002\u8fd9\u662f\u4e00\u79cd\u6301\u7eed\u7684\u60b2\u75db\u3002\u5b83\u4e5f\u4f1a\u5f71\u54cd\u6211\u4eec\u7684\u4eb2\u4eba\u3002\u8bf7\u6c38\u8fdc\u4fdd\u6301\u5584\u826f\u3002<\/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>\u6211\u4f1a\u8dd1\uff01\u5230\u5904\u8df3\u6211\u4f1a\u5f7b\u591c\u8df3\u821e\uff01\u6211\u8fd8\u4f1a\u5e2e\u6211\u7684\u670b\u53cb\u642c\u4e1c\u897f\u4ec0\u4e48\u7684\uff0c\u54c8\u54c8 \ud83d\ude09\ud83d\ude09\u3002<\/p>\n<p>&nbsp;<\/p>\n<p>\u5982\u9700\u9605\u8bfb\u66f4\u591a \"LGMD \u805a\u7126\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 https:\/\/www.lgmd-info.org\/spotlight-interviews\u3002<\/p>\n<p>&nbsp;<\/p>","protected":false},"excerpt":{"rendered":"<p>11\/06\/2015 NAME:\u00a0 Siri\u00a0 AGE: \u00a028 yrs. old COUNTRY: \u00a0Norway LGMD [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1048,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,45],"class_list":["post-1047","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","tag-norway"],"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 - Siri<\/title>\n<meta name=\"description\" content=\"Siri, 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\" 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