{"id":999,"date":"2015-08-27T15:25:15","date_gmt":"2015-08-27T20:25:15","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=999"},"modified":"2015-08-27T15:25:15","modified_gmt":"2015-08-27T20:25:15","slug":"sabrina","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/zh\/individuals-with-lgmd-interviews\/2015\/08\/27\/sabrina\/","title":{"rendered":"\u60a3\u6709 LGMD \u7684\u4e2a\u4eba\uff1a Sabrina"},"content":{"rendered":"

08\/27\/2015<\/p>\n

\u540d\u79f0<\/strong>: \u8428<\/strong>\u9e7e\u70ef \u00a0\u00a0\u00a0\u00a0\u00a0\u5e74\u9f84<\/strong> 32\"LGMD2D<\/a><\/p>\n

\u56fd\u5bb6\uff1a\u00a0 <\/strong>\u5b5f\u52a0\u62c9\u56fd<\/p>\n

LGMD \u5b50\u7c7b\u578b\uff1a<\/strong> \u00a0LGMD 2D<\/p>\n

\u00a0<\/strong><\/p>\n

\u60a8\u5728\u51e0\u5c81\u65f6\u88ab\u786e\u8bca <\/strong>:<\/p>\n

9 \u5c81\u90a3\u5e74\uff0c\u6211\u88ab\u8bca\u65ad\u51fa\u60a3\u6709\u5148\u5929\u6027\u5fc3\u810f\u75c5\u3002<\/p>\n

\u60a8\u6700\u521d\u7684\u75c7\u72b6\u662f\u4ec0\u4e48\uff1f <\/strong>:<\/p>\n

\u6211\u7ecf\u5e38\u6454\u5012\uff0c\u722c\u697c\u68af\u548c\u8dd1\u6b65\u90fd\u5f88\u56f0\u96be\u3002<\/p>\n

\u60a8\u662f\u5426\u6709\u5176\u4ed6\u5bb6\u5ead\u6210\u5458\u60a3\u6709 LGMD\uff1a<\/strong><\/p>\n

\u6211\u59b9\u59b9\u4e5f\u60a3\u6709 LGMD\uff01\u6211\u59b9\u59b9\u4e5f\u60a3\u6709 LGMD\u3002<\/p>\n

 <\/p>\n

\u60a8\u8ba4\u4e3a LGMD \u60a3\u8005\u5728\u751f\u6d3b\u4e2d\u9762\u4e34\u7684\u6700\u5927\u6311\u6218\u662f\u4ec0\u4e48\uff1f<\/strong>:<\/p>\n

\u60a3\u4e0a LGMD \u540e\uff0c\u6211\u9996\u5148\u9762\u4e34\u7684\u6311\u6218\u662f\u793e\u4f1a\u548c\u57fa\u7840\u8bbe\u65bd\u65b9\u9762\u7684\u969c\u788d\u3002\u6bd4\u5982\u56e0\u4e3a<\/p>\n

\u6211\u56fd\u4ea4\u901a\u4e0d\u4fbf\uff0c\u6211\u65e0\u6cd5\u5b8c\u6210\u5b66\u4e1a\u3002\u6211\u65e0\u6cd5\u53c2\u52a0\u5a5a\u793c\u3001\u5bb6\u5ead\u805a\u4f1a\u3001\u751f\u65e5\u6216\u5176\u4ed6\u7c7b\u4f3c\u6d3b\u52a8\u3002\u56e0\u6b64\uff0c\u6211\u4ece\u5c0f\u5c31\u51cf\u5c11\u4e86\u4e0e\u4ed6\u4eba\u7684\u4ea4\u5f80\u3002\u6211\u4e3b\u8981\u662f\u5728\u5bb6\u91cc\u7684\u56db\u9762\u5899\u58c1\u91cc\u957f\u5927\u3002<\/p>\n

\u6b64\u5916\uff0c\u6211\u5728\u8eab\u4f53\u4e0a\u9762\u4e34\u7684\u6311\u6218\u662f\uff0c\u6211\u65e0\u6cd5\u72ec\u7acb\u5b8c\u6210\u4efb\u4f55\u4e8b\u60c5\u3002\u9664\u4e86\u624b\u6307\u3001\u811a\u8dbe\u548c\u5934\u90e8\uff0c\u6211\u8eab\u4f53\u7684\u4efb\u4f55\u90e8\u4f4d\u90fd\u65e0\u6cd5\u52a8\u5f39\u3002\u51e0\u4e4e\u6240\u6709\u4e8b\u60c5\u6211\u90fd\u9700\u8981\u522b\u4eba\u7684\u5e2e\u52a9\uff0c\u6240\u4ee5\u5fc5\u987b\u5b8c\u5168\u4f9d\u8d56\u522b\u4eba\u3002\u51e0\u5929\u8fc7\u53bb\u4e86\uff0c\u73b0\u5728\u6211\u7684\u8eab\u4f53\u72b6\u51b5\u53d8\u5f97\u66f4\u52a0\u5371\u6025\u3002\u76ee\u524d\uff0c\u6211\u8eab\u4f53\u4e0a\u6700\u5927\u7684\u6311\u6218\u662f\u547c\u5438\u56f0\u96be\uff0c\u5c3d\u7ba1\u5982\u6b64\uff0c\u6211\u4ecd\u60f3\u6ee1\u6000\u6fc0\u60c5\u5730\u7ee7\u7eed\u751f\u6d3b\u4e0b\u53bb\u3002<\/p>\n

\u60a8\u6700\u5927\u7684\u6210\u5c31\u662f\u4ec0\u4e48\uff1f <\/strong>:<\/p>\n

\u5f53\u6709\u4e00\u5929\u6211\u77e5\u9053\u6211\u6700\u75bc\u7231\u7684\u59b9\u59b9\u4e5f\u60a3\u6709\u540c\u6837\u7684\u75be\u75c5\u65f6\uff0c\u6211\u7684\u751f\u6d3b\u5728\u4e00\u591c\u4e4b\u95f4\u53d1\u751f\u4e86\u6539\u53d8\u3002\u6211\u53ef\u4ee5\u60f3\u8c61\u5979\u7684\u672a\u6765\u4f1a\u548c\u6211\u7ecf\u5386\u7684\u4e00\u6837\u75db\u82e6--\u8fd9\u8ba9\u6211\u4e49\u6124\u586b\u81ba\u3002\u4e16\u754c\u4e0a\u5176\u4ed6\u5730\u65b9\u7684\u60c5\u51b5\u5e76\u4e0d\u4e00\u6837--\u4e3a\u4ec0\u4e48\u6211\u4eec\u56fd\u5bb6\u4f1a\u51fa\u73b0\u8fd9\u79cd\u6b67\u89c6\u60c5\u51b5\uff1f\u4e3a\u4ec0\u4e48\u4ed6\u4eec\u5728\u751f\u547d\u7684\u6700\u521d\u9636\u6bb5\u5c31\u5fc5\u987b\u5bf9\u6240\u6709\u4e8b\u60c5\u90fd\u8bf4 \"\u4e0d\"\uff1f\u5373\u4f7f\u878d\u5165\u4e86\u8fd9\u4e2a\u793e\u4f1a\uff0c\u4ed6\u4eec\u4e5f\u53d8\u5f97\u8d8a\u6765\u8d8a\u758f\u8fdc\u3002\u6240\u6709\u8fd9\u4e9b\u95ee\u9898\u5728\u6211\u8111\u6d77\u4e2d\u76d8\u65cb\uff0c\u6211\u5f00\u59cb\u611f\u5230\u6cae\u4e27\u30022008 \u5e74 2 \u6708\uff0c\u6211\u7684\u5fc3\u6001\u53d1\u751f\u4e86\u4e00\u70b9\u53d8\u5316\uff0c\u4e8e\u662f\u6211\u7ed9\u6211\u56fd\u603b\u7406\u5199\u4e86\u4e00\u5c01\u4fe1\u3002<\/p>\n

2009 \u5e74 4 \u6708\uff0c\u6211\u6709\u673a\u4f1a\u901a\u8fc7\u4e92\u8054\u7f51\u548c Facebook \u4e0e\u4e16\u754c\u53d6\u5f97\u8054\u7cfb\uff0c\u8fd9\u662f\u4e00\u79cd\u5c06\u4eba\u4eec\u805a\u96c6\u5728\u4e00\u8d77\u7684\u4fbf\u6377\u65b9\u5f0f\u3002\u5728\u4e00\u4f4d Facebook \u597d\u53cb\u7684\u542f\u53d1\u4e0b\uff0c\u6211\u8bd5\u7740\u5c06\u8fd9\u5c01\u4fe1\u53d1\u7ed9\u5c3d\u53ef\u80fd\u591a\u7684\u4eba\uff0c\u5e76\u901a\u8fc7\u5ba3\u4f20\u8ba9\u4ed6\u4eec\u4e86\u89e3\u6b8b\u75be\u4eba\u7684\u6743\u5229\u3002\u5c31\u8fd9\u6837\uff0c2009 \u5e74 7 \u6708 17 \u65e5\uff0c\u4e00\u4e2a\u5fd7\u613f\u7ec4\u7ec7--\u5b5f\u52a0\u62c9\u56fd\u53d8\u9769\u4e0e\u5021\u5bfc\u8054\u7cfb\u534f\u4f1a\uff08B-SCAN\uff09--\u5f00\u59cb\u4e86\u5b83\u7684\u65c5\u7a0b\uff0c\u76ee\u7684\u662f\u901a\u8fc7\u5021\u5bfc\u5b5f\u52a0\u62c9\u56fd\u7684\u5236\u5ea6\u53d8\u9769\u6765\u5efa\u7acb\u7f51\u7edc\uff0c\u4ece\u800c\u8ba9\u6b8b\u75be\u4eba\u8fc7\u4e0a\u66f4\u597d\u7684\u751f\u6d3b\u3002\u6211\u8fd8\u5f00\u59cb\u5728\u535a\u5ba2\u4e0a\u64b0\u5199\u6587\u7ae0\uff0c\u4ee5\u63d0\u9ad8\u4eba\u4eec\u7684\u8ba4\u8bc6\u30022011 \u5e74\uff0c\u6211\u5728\u5fb7\u56fd\u65b0\u95fb\u5e7f\u64ad\u516c\u53f8 \"\u5fb7\u56fd\u4e4b\u58f0 \"\u4e3e\u529e\u7684\u56fd\u9645\u535a\u5ba2\u5927\u8d5b\u4e2d\u83b7\u5f97\u63d0\u540d\uff0c\u5e76\u83b7\u5f97\u4e16\u754c\u7b2c\u4e8c\u540d\u7684\u597d\u6210\u7ee9\u3002<\/p>\n

B-SCAN \u4f5c\u4e3a\u4e00\u4e2a\u6574\u4f53\u5f97\u5230\u4e86\u5de8\u5927\u7684\u53cd\u54cd\uff0c\u8bb8\u591a\u4eba\u5bf9\u6b64\u8868\u793a\u5173\u6ce8\u3002\u6211\u4eec\u5728\u5899\u5185\u7684\u751f\u6d3b\u53d1\u751f\u4e86\u53d8\u5316\u3002\u6211\u4eec\u5f00\u59cb\u68a6\u60f3\u5728\u5168\u56fd\u8303\u56f4\u5185\u5f00\u5c55\u6b8b\u75be\u4eba\u6743\u5229\u548c\u610f\u8bc6\u8fd0\u52a8\uff0c\u5e0c\u671b\u6709\u4e00\u5929\u80fd\u8ba9\u4eba\u4eec\u610f\u8bc6\u5230\u5e76\u5173\u6ce8\u6b8b\u75be\u4eba\uff0c\u4ece\u800c\u5e2e\u52a9\u4ed6\u4eec\u83b7\u5f97\u81ea\u5df1\u7684\u6743\u5229\u3002<\/p>\n

\u6bcf\u5929\u65e9\u6668\u8d77\u5e8a\uff0c\u6620\u5165\u6211\u773c\u5e18\u7684\u7b2c\u4e00\u9053\u98ce\u666f\u5c31\u662f\u5f00\u9614\u7684\u84dd\u5929\u3002\u6211\u89c9\u5f97\u8fd9\u4e2a\u5730\u7403\u771f\u7f8e\uff0c\u751f\u6d3b\u771f\u7f8e\u597d\u3002\u6211\u5e0c\u671b\u80fd\u89e6\u6478\u5230\u5929\u7a7a\u3002\u6211\u5e0c\u671b\u7ad9\u5728\u5f00\u9614\u7684\u5929\u7a7a\u4e0b\u6df1\u547c\u5438\u3002\u6211\u4ece\u672a\u60f3\u8fc7\u81ea\u5df1\u80fd\u505a\u5230\u8fd9\u4e00\u70b9\uff0c\u6211\u53ea\u662f\u5728\u68a6\u4e2d\u8bb8\u613f\u3002\u8fd9\u79cd\u613f\u671b\uff0c\u8fd9\u79cd\u610f\u5fd7\u529b\u66fe\u7ecf\u7ed9\u4e86\u6211\u529b\u91cf\uff0c\u6fc0\u52b1\u6211\u597d\u597d\u751f\u6d3b\u3002\u53ea\u6709\u8fd9\u79cd\u610f\u5fd7\u529b\u624d\u4f7f\u6211\u68a6\u60f3\u6210\u4e3a B-SCAN\uff0c\u6211\u8ba4\u4e3a\u8fd9\u662f\u6211\u4e00\u751f\u4e2d\u6700\u5927\u7684\u6210\u529f\u3002B-SCAN \u662f\u6211\u5728\u5e7f\u9614\u5929\u7a7a\u4e0b\u7ff1\u7fd4\u7684\u52a8\u529b\u3002<\/p>\n

LGMD \u662f\u5982\u4f55\u5f71\u54cd\u60a8\u6210\u4e3a\u4eca\u5929\u7684\u81ea\u5df1\u7684\uff1f <\/strong>: <\/strong><\/p>\n

\u5f53\u6211\u88ab\u8bca\u65ad\u51fa\u60a3\u6709 LGMD \u65f6\uff0c\u6211\u4ece\u672a\u5c06\u5176\u89c6\u4e3a\u95ee\u9898\u6216\u7c7b\u4f3c\u7684\u4e1c\u897f\u3002\u5f53\u6211\u7684\u59d0\u59d0\u4e5f\u53d1\u751f\u4e86\u540c\u6837\u7684\u60c5\u51b5\u65f6\uff0c\u6211\u7684\u751f\u6d3b\u53d1\u751f\u4e86\u6539\u53d8\u3002\u5f53\u6211\u770b\u5230\u5979\u4e5f\u7ecf\u5386\u4e86\u540c\u6837\u7684\u75db\u82e6\u65f6\uff0c\u6211\u7684\u8111\u6d77\u4e2d\u51fa\u73b0\u4e86\u4e00\u5e45\u5168\u65b0\u7684\u753b\u9762\uff0c\u4e00\u4e2a\u5168\u65b0\u7684\u89c6\u89d2\u3002\u8fd9\u8ba9\u6211\u60f3\u5230\u4e86\u8fd9\u4e2a\u56fd\u5bb6\u7684\u6240\u6709 \"\u8428\u5e03\u4e3d\u5a1c\"\uff0c\u60f3\u5230\u4e86\u5979\u4eec\u7684\u751f\u5b58\u3001\u75db\u82e6\u548c\u4e0d\u5e78\u3002\u6240\u6709\u8fd9\u4e9b\u60f3\u6cd5\u5728\u6211\u5fc3\u4e2d\u50ac\u751f\u4e86\u4e00\u4e2a\u65b0\u7684\u8428\u5e03\u4e3d\u5a1c\u3002\u4f5c\u4e3a\u4e00\u4e2a\u4eba\uff0c\u6211\u53d8\u5f97\u66f4\u52a0\u575a\u5f3a\u3002<\/p>\n

\u6211\u5e0c\u671b\u6539\u53d8\u4eba\u4eec\u7684\u770b\u6cd5\uff0c\u8ba9\u8fd9\u91cc\u6210\u4e3a\u4e00\u4e2a\u9002\u5408\u6b8b\u75be\u4eba\u7684\u5730\u65b9\uff0c\u8ba9\u4ed6\u4eec\u4eab\u6709\u81ea\u5df1\u7684\u6743\u5229\u3002<\/p>\n

\u60a8\u5e0c\u671b\u4e16\u754c\u4e86\u89e3 LGMD \u7684\u54ea\u4e9b\u65b9\u9762\uff1f <\/strong>:<\/p>\n

\u60a3\u4e0a LGMD \u5e76\u4e0d\u662f\u751f\u547d\u7684\u7ec8\u7ed3\u3002\u6bcf\u4e2a\u4eba\u90fd\u5e94\u8d8a\u6765\u8d8a\u591a\u5730\u4e86\u89e3\u5b83\u3002\u8fd9\u53ef\u4ee5\u901a\u8fc7\u5b66\u4e60\u5404\u79cd\u76f8\u5173\u7f51\u7ad9\u6765\u5b9e\u73b0\u3002\u6bcf\u4e2a\u4eba\u90fd\u5e94\u4e00\u5982\u65e2\u5f80\u751a\u81f3\u66f4\u52a0\u81ea\u7531\u5feb\u4e50\u5730\u751f\u6d3b\u3002\u52aa\u529b\u4eab\u53d7\u751f\u547d\u4e2d\u7684\u6bcf\u4e00\u523b\u3002\u5982\u679c\u4ecd\u7136\u6ca1\u6709\u6cbb\u7597\uff0c\u4e5f\u4e0d\u8981\u7d27\u3002\u6cae\u4e27\u53ea\u4f1a\u8ba9\u4f60\u7684\u751f\u6d3b\u6210\u4e3a\u81ea\u5df1\u7684\u8d1f\u62c5\u3002\u751f\u6d3b\u771f\u7684\u5f88\u7f8e\u597d\u3002\u6709\u95ee\u9898\uff0c\u5c31\u4e00\u5b9a\u6709\u89e3\u51b3\u7684\u529e\u6cd5\u3002\u6211\u4eec\u53ea\u9700\u53bb\u5bfb\u627e\u3002\u6c38\u8fdc\u4fdd\u6301\u79ef\u6781\u4e50\u89c2\u3002<\/p>\n

\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

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08\/27\/2015 Name:\u00a0\u00a0\u00a0 Sabrina \u00a0\u00a0\u00a0\u00a0\u00a0AGE: 32 COUNTRY:\u00a0 Bangladesh LGMD Sub-Type: \u00a0LGMD […]<\/p>","protected":false},"author":1,"featured_media":1001,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,28],"tags":[52,29],"class_list":["post-999","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2d","tag-bangladesh","tag-lgmd2d"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Sabrina<\/title>\n<meta name=\"description\" content=\"Sabrina, who is 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\" href=\"https:\/\/www.lgmd-info.org\/zh\/individuals-with-lgmd-interviews\/2015\/08\/27\/sabrina\/\" \/>\n<meta property=\"og:locale\" content=\"zh_CN\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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