{"id":5588,"date":"2022-01-07T02:44:43","date_gmt":"2022-01-07T02:44:43","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5588"},"modified":"2024-02-09T14:23:57","modified_gmt":"2024-02-09T14:23:57","slug":"individual-with-lgmd-sophia","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/zh\/individuals-with-lgmd-interviews\/2022\/01\/07\/individual-with-lgmd-sophia\/","title":{"rendered":"\u60a3\u6709 LGMD \u7684\u4e2a\u4eba\uff1a\u7d22\u83f2\u4e9a"},"content":{"rendered":"<div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-1 fusion-flex-container nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-content-wrap\" style=\"max-width:1456px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-0 fusion_builder_column_1_1 1_1 fusion-flex-column\" style=\"--awb-bg-size:cover;--awb-width-large:100%;--awb-margin-top-large:0px;--awb-spacing-right-large:1.92%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:1.92%;--awb-width-medium:100%;--awb-spacing-right-medium:1.92%;--awb-spacing-left-medium:1.92%;--awb-width-small:100%;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\"><div class=\"fusion-column-wrapper fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-text fusion-text-1\"><p><img decoding=\"async\" class=\"lazyload wp-image-5587 size-medium alignright\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2022\/01\/LGMD2A-Sophia-F-300x169.png\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2022\/01\/LGMD2A-Sophia-F-300x169.png\" alt=\" \" width=\"300\" height=\"169\" srcset=\"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-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2022\/01\/LGMD2A-Sophia-F-200x113.png 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2022\/01\/LGMD2A-Sophia-F-300x169.png 300w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2022\/01\/LGMD2A-Sophia-F-400x225.png 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2022\/01\/LGMD2A-Sophia-F-600x338.png 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2022\/01\/LGMD2A-Sophia-F-768x432.png 768w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2022\/01\/LGMD2A-Sophia-F-800x450.png 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2022\/01\/LGMD2A-Sophia-F-1024x576.png 1024w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2022\/01\/LGMD2A-Sophia-F-1200x675.png 1200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2022\/01\/LGMD2A-Sophia-F.png 1280w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 300px) 100vw, 300px\" \/><\/p>\n<h2><strong>LGMD \"\u7126\u70b9\u8bbf\u8c08\" <\/strong><\/h2>\n<p><strong>\u540d\u79f0<\/strong>:  \u7d22\u83f2\u4e9a<\/p>\n<p><strong>\u5e74\u9f84<\/strong>: \u00a08<\/p>\n<p><strong>\u56fd\u5bb6<\/strong>:  \u7f8e\u56fd<\/p>\n<p><strong>LGMD \u5b50\u7c7b\u578b<\/strong>:  LGMD 2A\/R1 \u4e0e\u9499\u86cb\u767d\u9176 3 \u6709\u5173<\/p>\n<p><strong>\u60a8\u5728\u51e0\u5c81\u65f6\u88ab\u786e\u8bca<\/strong>?<\/p>\n<p>\u6211 6 \u5c81\u65f6\u901a\u8fc7\u57fa\u56e0\u8840\u6db2\u68c0\u6d4b\u88ab\u6b63\u5f0f\u786e\u8bca\u3002<\/p>\n<p><strong>\u60a8\u6700\u521d\u7684\u75c7\u72b6\u662f\u4ec0\u4e48\uff1f<\/strong>?<\/p>\n<p>\u6211 4.5 \u5c81\u65f6\u5f97\u4e86\u80ba\u708e\uff0c\u56e0\u4e3a\u75c5\u4e86\u5f88\u957f\u65f6\u95f4\uff0c\u5988\u5988\u5e26\u6211\u53bb\u505a\u4e86\u8840\u68c0\u3002\u6211\u7684\u809d\u9176\u6c34\u5e73\u975e\u5e38\u9ad8\uff0c\u56e0\u6b64\u533b\u751f\u5f00\u59cb\u5bfb\u627e\u539f\u56e0\u3002\u6211\u8fd8\u5f00\u59cb\u7528\u811a\u8dbe\u8d70\u8def\u3002\u6211\u5728\u5f88\u591a\u533b\u9662\u8fdb\u8fdb\u51fa\u51fa\uff0c\u88ab\u8bef\u8bca\u4e86\u4e00\u5e74\u534a\u3002\u867d\u7136\u5f88\u5bb3\u6015\uff0c\u4f46\u6211\u5f88\u52c7\u6562\u3002<\/p>\n<p><strong>\u60a8\u6709\u5176\u4ed6\u5bb6\u5ead\u6210\u5458\u60a3\u6709 LGMD \u5417\uff1f <\/strong><\/p>\n<p>\u636e\u6211\u4eec\u6240\u77e5\u6ca1\u6709\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\u6700\u5927\u7684\u6311\u6218\u662f\u8981\u8d70\u5f88\u8fdc\u7684\u8def\uff0c\u6211\u7684\u817f\u4f1a\u5f88\u7d2f\uff0c\u770b\u5230\u5b69\u5b50\u4eec\u5728\u73a9\u800d\u65f6\u505a\u7684\u4e8b\u60c5\uff0c\u6211\u77e5\u9053\u8fd9\u4f1a\u8ba9\u6211\u7684\u817f\u548c\u80f3\u818a\u5f88\u7d2f\u3002\u6211\u4ee5\u524d\u4e5f\u80fd\u505a\u5355\u6760\u3002\u8fd9\u8ba9\u6211\u5f88\u96be\u8fc7\u3002\u6211\u7684\u5bb6\u4eba\u603b\u662f\u60f3\u65b9\u8bbe\u6cd5\u5e2e\u6211\u505a\u4e8b\uff0c\u4f46\u770b\u7740\u5176\u4ed6\u540c\u9f84\u5b69\u5b50\u5728\u5954\u8dd1\u73a9\u800d\u65f6\u4e0d\u4f1a\u50cf\u6211\u4e00\u6837\u5f88\u5feb\u7d2f\u5012\uff0c\u6211\u8fd8\u662f\u5f88\u96be\u53d7\u3002<\/p>\n<p><strong>\u60a8\u6700\u5927\u7684\u6210\u5c31\u662f\u4ec0\u4e48\uff1f<\/strong><\/p>\n<p>\u6211\u4e0e\u6211\u7684 3<sup>rd<\/sup> \u5c3d\u7ba1\u6211\u771f\u7684\u5f88\u5bb3\u6015\uff0c\u4f46\u6211\u8fd8\u662f\u5728\u65b0\u5b66\u6821\u7684\u5e74\u7ea7\u73ed\u4e0a\u8bb2\u8ff0\u4e86\u6211\u7684 LGMD2A\u3002\u6211\u5e2e\u52a9\u63d0\u9ad8\u4eba\u4eec\u7684\u8ba4\u8bc6\uff0c\u8ba9\u5176\u4ed6\u5b69\u5b50\u4e0d\u5fc5\u4e3a\u786e\u8bca\u800c\u7ecf\u5386\u8fd9\u4e48\u591a\uff0c\u5e76\u5e2e\u52a9\u6211\u4eec\u627e\u5230\u6cbb\u7597\u65b9\u6cd5\u3002\u867d\u7136\u6211\u60a3\u6709\u808c\u8089\u840e\u7f29\u75c7\uff0c\u4f46\u6211\u53ef\u4ee5\u505a\u9a6c\u620f\u56e2\u8425\u548c\u80cc\u5f2f\u3002\u5373\u4f7f\u660e\u77e5\u56f0\u96be\u91cd\u91cd\uff0c\u6211\u4e5f\u4e0d\u4f1a\u56e0\u6b64\u800c\u653e\u5f03\u5c1d\u8bd5\u65b0\u4e8b\u7269\u3002\u6211\u8fd8\u5b66\u4f1a\u4e86\u9a91\u7535\u52a8\u8f66\uff0c\u8fd9\u6837\u6211\u5c31\u53ef\u4ee5\u548c\u670b\u53cb\u4eec\u4e00\u8d77\u73a9\u4e86\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\u8ba9\u6211\u53d8\u5f97\u975e\u5e38\u52c7\u6562\u3002\u6211\u9762\u5bf9\u5728\u4eba\u524d\u6454\u5012\u548c\u53bb\u533b\u9662\u5c31\u8bca\u7684\u6050\u60e7\uff0c\u8fd9\u8ba9\u6211\u53d8\u5f97\u575a\u5f3a\u3002\u6211\u4e0d\u53bb\u770b\u522b\u4eba\u7684\u6b8b\u75be\uff0c\u4e5f\u4e0d\u53bb\u76ef\u7740\u522b\u4eba\u770b\uff0c\u6211\u770b\u5230\u7684\u662f\u4ed6\u4eec\u3002\u6211\u4e5f\u5728\u5b66\u4e60\u63a5\u53d7\u6211\u81ea\u5df1\u3002<\/p>\n<p><strong>\u60a8\u5e0c\u671b\u4e16\u754c\u4e86\u89e3 LGMD \u7684\u54ea\u4e9b\u65b9\u9762\uff1f<\/strong>?<\/p>\n<p>\u4f60\u53ef\u4ee5\u62e5\u6709\u975e\u5e38\u5feb\u4e50\u7684\u751f\u6d3b\uff0c\u5bb6\u957f\u4eec\u9700\u8981\u77e5\u9053\uff0c\u50cf\u6211\u8fd9\u6837\u7684\u5b69\u5b50\u5373\u4f7f\u9762\u4e34\u808c\u8089\u840e\u7f29\u75c7\u7684\u6311\u6218\u4e5f\u80fd\u5feb\u4e50\u5730\u751f\u6d3b\u3002\u5c3d\u7ba1\u6211\u60a3\u6709\u808c\u8089\u840e\u7f29\u75c7\uff0c\u4f46\u6211\u8fd8\u662f\u60f3\u529e\u6cd5\u56db\u5904\u8d70\u52a8\uff0c\u5e76\u5728\u9700\u8981\u65f6\u4f7f\u7528\u8f6e\u6905\u3002  \u8fd9\u5e76\u4e0d\u603b\u662f\u90a3\u4e48\u5bb9\u6613\uff0c\u5f53\u4f60\u7684\u8eab\u4f53\u4e0d\u80fd\u5982\u4f60\u6240\u613f\u65f6\uff0c\u4f60\u53ef\u80fd\u4f1a\u611f\u5230\u5bb3\u6015\u3002\u6211\u60f3\u8ba9\u5168\u4e16\u754c\u77e5\u9053\uff0c\u50cf\u6211\u8fd9\u6837\u7684\u5b69\u5b50\u6b63\u5728\u7b49\u5f85\u6cbb\u6108\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\u60f3\u8dd1\u5f97\u53c8\u5feb\u53c8\u8fdc\uff0c\u9a91\u666e\u901a\u81ea\u884c\u8f66\uff0c\u505a\u5355\u6760\u548c\u5f88\u591a\u4f53\u64cd\u3002<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5587,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-5588","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 is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>INDIVIDUAL WITH LGMD: Sophia - LGMD Awareness Foundation<\/title>\n<meta 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