{"id":1765,"date":"2018-03-21T12:07:30","date_gmt":"2018-03-21T17:07:30","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1765"},"modified":"2018-03-21T12:07:30","modified_gmt":"2018-03-21T17:07:30","slug":"ralph-2","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/zh\/individuals-with-lgmd-interviews\/2018\/03\/21\/ralph-2\/","title":{"rendered":"\u60a3\u6709 LGMD \u7684\u4e2a\u4eba\uff1a \u62c9\u5c14\u592b"},"content":{"rendered":"<p><strong>LGMD \"\u7126\u70b9\u8bbf\u8c08\"<\/strong><\/p>\n<p><strong>\u540d\u79f0<\/strong>:  \u62c9\u5c14\u592b\u00a0\u00a0\u00a0 <strong>\u5e74\u9f84<\/strong>:58 \u5c81\u5e74\u9f84<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2018\/03\/LGMD2L-Ralph.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1764 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\/2018\/03\/LGMD2L-Ralph-300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>\u56fd\u5bb6<\/strong>:   \u7f8e\u56fd<\/p>\n<p><strong>LGMD \u5b50\u7c7b\u578b\uff1a\u00a0 <\/strong>LGMD2L \/ Anoctaminopathy<\/p>\n<p>&nbsp;<\/p>\n<p><strong>\u60a8\u5728\u51e0\u5c81\u65f6\u88ab\u786e\u8bca<\/strong>:<\/p>\n<p>\u6211\u4ece 2006 \u5e74 47 \u5c81\u65f6\u5f00\u59cb\u51fa\u73b0\u75c7\u72b6\uff0c\u5230 2011 \u5e74\u53d1\u73b0 LGMD2L \u65f6\u88ab\u786e\u8bca\u3002<\/p>\n<p><strong>\u60a8\u6700\u521d\u7684\u75c7\u72b6\u662f\u4ec0\u4e48\uff1f<\/strong>:<\/p>\n<p>\u817f\u90e8\u65e0\u529b\u6211\u662f\u4e00\u540d\u4e3e\u91cd\u8fd0\u52a8\u5458\uff0c30 \u591a\u5c81\u65f6\u66fe\u5367\u63a8 300 \u78c5\uff0c\u6df1\u8e72 400 \u78c5\u3002\u4f46\u6211\u611f\u5230\u5de6\u817f\u65e0\u529b\uff0c\u4e8e\u662f\u6211\u53bb\u5065\u8eab\u623f\u5c1d\u8bd5\u7528\u4e00\u6761\u817f\u540c\u65f6\u8fdb\u884c\u817f\u90e8\u63a8\u4e3e\u3002\u6211\u7684\u53f3\u817f\u80fd\u4e3e 250 \u78c5\uff0c\u4f46\u5de6\u817f\u5374\u53ea\u80fd\u4e3e 150 \u78c5\u3002<\/p>\n<p><strong>\u60a8\u662f\u5426\u6709\u5176\u4ed6\u5bb6\u5ead\u6210\u5458\u60a3\u6709 LGMD\uff1a<\/strong><\/p>\n<p>\u6211\u6709\u4e00\u4e2a\u5144\u5f1f\u88ab\u786e\u8ba4\u4e3a 2L\u3002\u53ef\u80fd\u8fd8\u6709\u5176\u4ed6\u4eba\uff0c\u4f46\u6211\u4eec\u8fd8\u4e0d\u77e5\u9053\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>\u5728\u4efb\u4f55\u60c5\u51b5\u4e0b\u90fd\u80fd\u56db\u5904\u8d70\u52a8\u3002\u4e0a\u697c\u68af\u5f88\u96be\u3002\u79bb\u5f00\u6905\u5b50\u5f88\u56f0\u96be\u3002\u8d70\u8def\u8fd8\u53ef\u4ee5\uff0c\u4f46\u8981\u8d70\u66f4\u8fdc\u7684\u8ddd\u79bb\u5c31\u8d8a\u6765\u8d8a\u56f0\u96be\u3002\u5982\u679c\u819d\u76d6\u53d7\u529b\u3001\u7eca\u5012\u6216\u6ed1\u5012\uff0c\u6454\u5012\u603b\u662f\u4f1a\u53d1\u751f\u3002<\/p>\n<p><strong>\u60a8\u6700\u5927\u7684\u6210\u5c31\u662f\u4ec0\u4e48\uff1f<\/strong>:<\/p>\n<p>\u6211\u5728\u6b8b\u75be\u4eba\u9886\u57df\u505a\u4e86\u5927\u91cf\u5de5\u4f5c\uff0c\u5305\u62ec\u76ee\u524d\u662f MDA \u5168\u56fd\u793e\u533a\u54a8\u8be2\u59d4\u5458\u4f1a\u6210\u5458\uff0c\u5e76\u4e0e\u5176\u4ed6\u51e0\u4e2a\u7ec4\u7ec7\u5408\u4f5c\uff0c\u540c\u65f6\u6211\u8fd8\u521b\u529e\u4e86 LGMD2L \u57fa\u91d1\u4f1a\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>\u5f53\u4f60\u770b\u5230\u6211\u5217\u51fa\u7684\u6700\u5927\u6210\u5c31\u65f6\uff0c\u4f60\u5c31\u4f1a\u660e\u767d\uff0cLGMD2L \u8ba9\u6211\u4e3a\u8fd9\u4e48\u591a\u5404\u7c7b\u6b8b\u75be\u4eba\u5de5\u4f5c\u3002<\/p>\n<p><strong>\u60a8\u5e0c\u671b\u4e16\u754c\u4e86\u89e3 LGMD \u7684\u54ea\u4e9b\u65b9\u9762\uff1f<\/strong>:<\/p>\n<p>\u6211\u4eec\u79bb\u771f\u6b63\u7684\u6cbb\u7597\u548c\u6cbb\u6108\u65b9\u6cd5\u8d8a\u6765\u8d8a\u8fd1\u4e86\uff0c\u5982\u679c\u6211\u4eec\u9f50\u5fc3\u534f\u529b\uff0c\u8fd9\u4e00\u53ef\u80fd\u6839\u9664\u808c\u8089\u840e\u7f29\u75c7\u7684\u6210\u5c31\u5c06\u5e2e\u52a9\u5f88\u591a\u4eba\u548c\u5bb6\u5ead\uff0c\u65e0\u8bba\u662f\u73b0\u5728\u8fd8\u662f\u5c06\u6765\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\u50cf\u5e74\u8f7b\u65f6\u4e00\u6837\u91cd\u65b0\u5f00\u59cb\u953b\u70bc\uff0c\u5728\u4eab\u53d7\u65c5\u884c\u548c\u4e16\u754c\u7f8e\u666f\u7684\u540c\u65f6\uff0c\u4e13\u6ce8\u4e8e\u589e\u5f3a\u771f\u6b63\u7684\u529b\u91cf\u548c\u5065\u5eb7\u3002<\/p>\n<p>&nbsp;<\/p>\n<p>* * * \u6b32\u4e86\u89e3\u66f4\u591a \"LGMD \u7126\u70b9\u8bbf\u8c08 \"\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><u>\u00a0 <\/u><\/p>\n<p>* * * \u8bf7\u70b9\u8d5e\u3001\u8bc4\u8bba\u548c\u5206\u4eab\u672c\u5e16\uff0c\u5e2e\u52a9\u63d0\u9ad8\u4eba\u4eec\u5bf9 LGMD \u7684\u8ba4\u8bc6\uff01<\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name:\u00a0 Ralph\u00a0\u00a0\u00a0 AGE: 58 Yrs. Old Country: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1764,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,49],"tags":[93],"class_list":["post-1765","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2l","tag-lgmd2l-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: Ralph - 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\/2018\/03\/21\/ralph-2\/\" \/>\n<meta property=\"og:locale\" content=\"zh_CN\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Ralph - LGMD Awareness Foundation\" \/>\n<meta property=\"og:description\" content=\"LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name:\u00a0 Ralph\u00a0\u00a0\u00a0 AGE: 58 Yrs. 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