{"id":5172,"date":"2021-05-17T20:23:28","date_gmt":"2021-05-17T20:23:28","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5172"},"modified":"2024-02-09T14:24:21","modified_gmt":"2024-02-09T14:24:21","slug":"5172","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/zh\/individuals-with-lgmd-interviews\/2021\/05\/17\/5172\/","title":{"rendered":"\u60a3\u6709 LGMD \u7684\u4e2a\u4eba\uff1a Maria"},"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:20px;--awb-spacing-left-large:1.92%;--awb-width-medium:100%;--awb-order-medium:0;--awb-spacing-right-medium:1.92%;--awb-spacing-left-medium:1.92%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-image-element\" style=\"--awb-caption-title-font-family:var(--h2_typography-font-family);--awb-caption-title-font-weight:var(--h2_typography-font-weight);--awb-caption-title-font-style:var(--h2_typography-font-style);--awb-caption-title-size:var(--h2_typography-font-size);--awb-caption-title-transform:var(--h2_typography-text-transform);--awb-caption-title-line-height:var(--h2_typography-line-height);--awb-caption-title-letter-spacing:var(--h2_typography-letter-spacing);\"><span class=\"fusion-imageframe imageframe-none imageframe-1 hover-type-none\"><img decoding=\"async\" width=\"300\" height=\"169\" alt=\"Lgmd1b Maria D\" title=\"Lgmd1b Maria D\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/05\/LGMD1B-Maria-D.png\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/05\/LGMD1B-Maria-D-300x169.png\" class=\"lazyload img-responsive wp-image-5173\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271280%27%20height%3D%27720%27%20viewBox%3D%270%200%201280%20720%27%3E%3Crect%20width%3D%271280%27%20height%3D%27720%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/05\/LGMD1B-Maria-D-200x113.png 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/05\/LGMD1B-Maria-D-400x225.png 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/05\/LGMD1B-Maria-D-600x338.png 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/05\/LGMD1B-Maria-D-800x450.png 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/05\/LGMD1B-Maria-D-1200x675.png 1200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/05\/LGMD1B-Maria-D.png 1280w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 640px) 100vw, 300px\" \/><\/span><\/div><div class=\"fusion-text fusion-text-1\"><p><strong>\u00a0<\/strong><\/p>\n<p><strong>\u540d\u79f0<\/strong>:\u739b\u4e3d\u4e9a <strong>\u5e74\u9f84<\/strong>: 29 \u5c81<\/p>\n<p><strong>\u56fd\u5bb6<\/strong>:\u7f8e\u56fd<\/p>\n<p><strong>LGMD \u5b50\u7c7b\u578b<\/strong>:LGMD 1B<\/p>\n<p>&nbsp;<\/p>\n<p><strong>\u60a8\u5728\u51e0\u5c81\u65f6\u88ab\u786e\u8bca<\/strong>:<\/p>\n<p>\u6700\u521d\uff0c\u6211\u5728\u4e24\u5c81\u65f6\u88ab\u8bca\u65ad\u51fa\u60a3\u6709 SMA\u300215 \u5c81\u65f6\uff0c\u6211\u518d\u6b21\u88ab\u8bca\u65ad\u51fa\u60a3\u6709\u80a2\u8170\u808c\u8425\u517b\u4e0d\u826f\u75c7\u3002<\/p>\n<p><strong>\u60a8\u6700\u521d\u7684\u75c7\u72b6\u662f\u4ec0\u4e48\uff1f<\/strong>:<\/p>\n<p>\u6211\u7236\u6bcd\u8bf4\u6211\u76f4\u5230 17 \u4e2a\u6708\u624d\u4f1a\u8d70\u8def\u3002\u6211\u8d70\u8def\u7684\u65f6\u5019\u4e5f\u662f\u6447\u6447\u6643\u6643\u7684\uff0c\u800c\u4e14\u5728\u8e52\u8dda\u5b66\u6b65\u7684\u65f6\u5019\u5c31\u7528\u624b\u81c2\u5e2e\u52a9\u6211\u4ece\u5750\u59ff\u7ad9\u8d77\u6765\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\u7684 LGMD \u60a3\u8005\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>\u7cbe\u795e\u4e0a\uff1a\u5047\u8bbe\u6211\u4eec\u8fc7\u7740\u4e0d\u6b63\u5e38\u7684\u751f\u6d3b\uff0c\u8fd9\u5bf9\u6211\u6765\u8bf4\u662f\u6700\u5927\u7684\u6311\u6218\u3002\u8eab\u4f53\u65b9\u9762\uff1a\u5f53\u6211\u53d1\u73b0\u67d0\u4e9b\u90e8\u4f4d\u53d8\u5f31\u65f6\uff0c\u8981\u5b66\u4f1a\u63a5\u53d7\u8fd9\u79cd\u53d8\u5316\u3002<\/p>\n<p><strong>\u60a8\u6700\u5927\u7684\u6210\u5c31\u662f\u4ec0\u4e48\uff1f<\/strong>:<\/p>\n<p>\u62ff\u5230\u9a7e\u7167\uff0c\u6709\u4e86\u81ea\u5df1\u7684\u8f66\u3002\u8fd9\u4e2a\u8fc7\u7a0b\u8017\u65f6\u4e24\u5e74\u4e4b\u4e45\u3002\u611f\u89c9\u6c38\u8fdc\u770b\u4e0d\u5230\u5c3d\u5934\u3002\u62e5\u6709\u6c7d\u8f66\u6539\u53d8\u4e86\u6211\u7684\u751f\u6d3b\uff0c\u8ba9\u6211\u5c3d\u53ef\u80fd\u4fdd\u6301\u72ec\u7acb\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>\u8fd9\u65e0\u7591\u5851\u9020\u4e86\u6211\u7684\u6027\u683c\u548c\u4e3a\u4eba\u3002\u6211\u52c7\u731b\u7684\u4e2a\u6027\u6765\u81ea\u4e8e\u6211\u5411\u4ed6\u4eba\u5c55\u793a\u6211\u4eec\u80fd\u529b\u7684\u51b3\u5fc3\u3002\u6211\u5145\u6ee1\u6fc0\u60c5\u7684\u4e00\u9762\u6765\u81ea\u4e8e\u6211\u4ece\u7b2c\u4e00\u5929\u8d77\uff0c\u751a\u81f3\u5728\u5b69\u63d0\u65f6\u4ee3\u5c31\u5f00\u59cb\u594b\u6597\u3002\u5728\u6b8b\u75be\u7684\u73af\u5883\u4e2d\u6210\u957f\uff0c\u5851\u9020\u4e86\u6211\u66f4\u591a\u6211\u80fd\u60f3\u8c61\u5230\u7684\u4e1c\u897f\u3002\u6211\u77e5\u9053\uff0c\u8fd9\u79cd\u75be\u75c5\u5c06\u6211\u5851\u9020\u6210\u4e86\u4eba\u4eba\u7686\u77e5\u7684\u739b\u4e3d\u4e9a\u3002<\/p>\n<p><strong>\u60a8\u5e0c\u671b\u4e16\u754c\u4e86\u89e3 LGMD \u7684\u54ea\u4e9b\u65b9\u9762\uff1f<\/strong>:<\/p>\n<p>\u6211\u60f3\u8ba9\u4eba\u4eec\u77e5\u9053\uff0c\u8fd9\u79cd\u75c5\u88ab\u8ba4\u4e3a\u662f\u4e00\u79cd\u7f55\u89c1\u75c5\uff0c\u56e0\u6b64\u6ca1\u6709\u6cbb\u7597\u65b9\u6cd5\u6216\u6cbb\u6108\u65b9\u6cd5\u3002\u6b64\u5916\uff0c\u6211\u8fd8\u60f3\u5728\u5c71\u9876\u4e0a\u5927\u558a\uff0c\u8fd9\u4e0d\u662f\u591a\u53d1\u6027\u786c\u5316\u75c7\uff01<\/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\u53bb\u63a5\u6211\u7684\u4e94\u4e2a\u4f84\u5973\u548c\u4f84\u5b50\u3002\u6211\u4f1a\u53bb\u5546\u573a\u6311\u9009\u8863\u670d\uff0c\u4e0d\u7528\u62c5\u5fc3\u7626\u5f97\u7a7f\u4e0d\u4e0b\u4efb\u4f55\u8863\u670d\u3002\u7136\u540e\u6211\u53ef\u80fd\u4f1a\u53bb\u6253\u63a8\u6746\u3002\u8fd9\u7edd\u5bf9\u662f\u6211\u6000\u5ff5\u7684\u4e1c\u897f\uff0c\u66fe\u7ecf\u662f\u6211\u7ae5\u5e74\u7684\u91cd\u8981\u7ec4\u6210\u90e8\u5206\u3002\u5c0f\u65f6\u5019\uff0c\u7238\u7238\u51e0\u4e4e\u6bcf\u5468\u90fd\u4f1a\u5e26\u6211\u548c\u59d0\u59d0\u4eec\u53bb\u6253\u7403\uff0c\u8fd9\u4e5f\u6210\u4e86\u6211\u6700\u559c\u6b22\u505a\u7684\u4e8b\u60c5\u4e4b\u4e00\u3002<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5173,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,44],"tags":[],"class_list":["post-5172","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd1b"],"acf":[],"yoast_head":"<!-- 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