{"id":1446,"date":"2017-04-08T12:30:56","date_gmt":"2017-04-08T17:30:56","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1446"},"modified":"2017-04-08T12:30:56","modified_gmt":"2017-04-08T17:30:56","slug":"darlene","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/zh\/individuals-with-lgmd-interviews\/2017\/04\/08\/darlene\/","title":{"rendered":"\u60a3\u6709 LGMD \u7684\u4e2a\u4eba\uff1a Darlene"},"content":{"rendered":"<p><strong>LGMD \"\u7126\u70b9\u8bbf\u8c08\"<\/strong><\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p><strong>\u540d\u79f0<\/strong>:  \u8fbe\u7433\u00a0\u00a0\u00a0 <strong>\u5e74\u9f84<\/strong>\u5e74\u9f84\uff1a 65 \u5c81<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2017\/04\/Non-Dysferlin-Miyoshi-Myopathy.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1445 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\/2017\/04\/Non-Dysferlin-Miyoshi-Myopathy-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<\/strong>:    \u975e\u94c1\u86cb\u767d\u5bab\u808c\u75c5<\/p>\n<p>&nbsp;<\/p>\n<p><strong>\u60a8\u5728\u51e0\u5c81\u65f6\u88ab\u786e\u8bca<\/strong>:<\/p>\n<p>\u6211\u662f\u5728 64 \u5c81\u65f6\u88ab\u786e\u8bca\u7684\u3002<\/p>\n<p><strong>\u60a8\u6700\u521d\u7684\u75c7\u72b6\u662f\u4ec0\u4e48\uff1f<\/strong>:<\/p>\n<p>\u73b0\u5728\u56de\u60f3\u8d77\u6765\uff0c\u6211\u610f\u8bc6\u5230\u8fd9\u4e9b\u75c7\u72b6\u59cb\u4e8e 40 \u591a\u5c81\u751a\u81f3\u66f4\u65e9\u3002  \u6211\u4e00\u76f4\u90fd\u5f88\u6d3b\u8dc3\uff0c\u4f46\u968f\u7740\u65f6\u95f4\u7684\u63a8\u79fb\uff0c\u8dd1\u6b65\u3001\u6ed1\u96ea\u548c\u6ed1\u51b0\u7b49\u6280\u80fd\u53d8\u5f97\u8d8a\u6765\u8d8a\u56f0\u96be\uff0c\u4e8e\u662f\u6211\u5f00\u59cb\u8fdb\u884c\u5176\u4ed6\u6d3b\u52a8\uff0c\u5982\u9a91\u8f66\u3001\u58f6\u94c3\u3001\u4e3e\u91cd\u548c CrossFit \u8bad\u7ec3\u3002  \u4e3a\u4e86\u5e94\u5bf9\u96f7\u8bfa\u6c0f\u75c7\u7684\u75c7\u72b6\uff0c\u6211\u7a7f\u5f97\u66f4\u6696\u548c\u4e86\u3002  60 \u5c81\u51fa\u5934\u65f6\uff0c\u6211\u7684\u5c0f\u817f\u51fa\u73b0\u4e86\u660e\u663e\u7684\u808c\u8089\u840e\u7f29\uff0c\u8fd9\u5f00\u59cb\u4e86\u6211\u957f\u8fbe\u4e00\u5e74\u7684\u8bca\u65ad\u4e4b\u65c5\u3002  \u5f53\u65f6\uff0c80-90% \u7684\u4e24\u5757\u8153\u80a0\u808c\u5df2\u88ab\u8102\u80aa\u53d6\u4ee3\u3002<\/p>\n<p><strong>\u60a8\u662f\u5426\u6709\u5176\u4ed6\u5bb6\u5ead\u6210\u5458\u60a3\u6709 LGMD\uff1a<\/strong><\/p>\n<p>\u6ca1\u6709\uff0c\u4f46\u6709\u4e24\u4e2a\u59d0\u59b9\u60a3\u6709\u9752\u5c11\u5e74\u7cd6\u5c3f\u75c5\u3002  \u5176\u4e2d\u4e00\u4e2a 53 \u5c81\u65f6\u6b7b\u4e8e\u8be5\u75c5\u7684\u5fc3\u810f\u5e76\u53d1\u75c7\u3002  \u53e6\u4e00\u4e2a\u73b0\u5e74 58 \u5c81\uff0c\u5065\u5eb7\u72b6\u51b5\u4e0d\u4f73\uff0c39 \u5c81\u65f6\u690d\u5165\u4e86\u80be\u810f\/\u80f0\u817a\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>\u4f5c\u4e3a CrossFit \u5065\u8eab\u623f\u7684\u5171\u540c\u7ecf\u8425\u8005\uff0c\u6211\u4e00\u76f4\u5728\u52aa\u529b\u5bfb\u627e\u9002\u5f53\u7684\u5e73\u8861\u70b9\uff0c\u65e2\u8981\u52aa\u529b\u5de5\u4f5c\uff0c\u6311\u6218\u5e76\u4fdd\u6301\u5065\u5eb7\u808c\u8089\u7684\u5f3a\u5065\u548c\u6d3b\u52a8\u80fd\u529b\uff0c\u53c8\u4e0d\u80fd\u592a\u62fc\u547d\uff0c\u4ee5\u514d\u7834\u574f\u6709\u98ce\u9669\u7684\u808c\u8089\u3002  \u5230\u76ee\u524d\u4e3a\u6b62\uff0c\u75be\u75c5\u5bf9\u6211\u751f\u6d3b\u7684\u5f71\u54cd\u5fae\u4e4e\u5176\u5fae\uff1a\u6211\u7684\u5916\u8868\u3001\u611f\u89c9\u548c\u884c\u52a8\u90fd\u6bd4\u4e00\u822c 65 \u5c81\u7684\u8001\u4eba\u5e74\u8f7b\u3002  \u6211\u52aa\u529b\u628a\u6ce8\u610f\u529b\u96c6\u4e2d\u5728\u6211\u6bcf\u5929\u80fd\u591f\u505a\u7684\u4e8b\u60c5\u4e0a\uff0c\u5e76\u63d0\u9192\u81ea\u5df1\uff0c\u4e0d\u53ea\u662f\u6211\uff0c\u6bcf\u4e2a\u4eba\u90fd\u9762\u4e34\u7740\u4e00\u79cd\u53eb\u505a\u8870\u8001\u7684\u6e10\u8fdb\u6027\u9000\u884c\u6027\u75be\u75c5\u3002<\/p>\n<p><strong>\u60a8\u6700\u5927\u7684\u6210\u5c31\u662f\u4ec0\u4e48\uff1f<\/strong>:<\/p>\n<p>\u5728\u6211\u7684\u6210\u957f\u8fc7\u7a0b\u4e2d\uff0c\u60a3\u6709\u7cd6\u5c3f\u75c5\u7684\u59d0\u59b9\u7ed9\u6211\u7559\u4e0b\u4e86\u826f\u597d\u8425\u517b\u548c\u5b9a\u671f\u953b\u70bc\u7684\u6df1\u523b\u5370\u8c61\u3002  \u6211\u660e\u767d\uff0c\u5403\u8fdb\u5634\u91cc\u7684\u4e1c\u897f\u5f88\u91cd\u8981\uff0c\u65e0\u8bba\u4f60\u5f97\u4e86\u4ec0\u4e48\u75c5\uff0c\u5145\u8db3\u7684\u7761\u7720\u548c\u4ece\u538b\u529b\u4e2d\u6062\u590d\u8fc7\u6765\u90fd\u662f\u5fc5\u4e0d\u53ef\u5c11\u7684\u3002  \u867d\u7136\u6211\u65e0\u6cd5\u786e\u5b9a\u5065\u5eb7\u7684\u751f\u6d3b\u4e60\u60ef\u662f\u5426\u6709\u52a9\u4e8e\u5c06\u6211\u7684\u75c7\u72b6\u964d\u5230\u6700\u4f4e\uff0c\u4f46\u6211\u9009\u62e9\u76f8\u4fe1\u5b83\u4eec\u786e\u5b9e\u5982\u6b64\uff0c\u5e76\u5c06\u7ee7\u7eed\u5728\u8fd9\u65b9\u9762\u5c3d\u53ef\u80fd\u79ef\u6781\u4e3b\u52a8\u3002  \u4f5c\u4e3a\u4e00\u540d\u6559\u7ec3\uff0c\u6211\u80fd\u591f\u4e3a\u4f18\u79c0\u7684\u5065\u5eb7\u5b9e\u8df5\u505a\u51fa\u699c\u6837\uff0c\u5e76\u4e0e\u6211\u4eec\u7684\u4f1a\u5458\u5bc6\u5207\u5408\u4f5c\uff0c\u8ba9\u4ed6\u4eec\u81ea\u5df1\u4e5f\u80fd\u4ece\u4e2d\u53d7\u76ca\u3002  \u6211\u572860\u5c81\u65f6\u6210\u4e3a\u4e86\u4e00\u540dCrossFit\u6559\u7ec3\uff08\u5728\u6b64\u4e4b\u524d\uff0c\u6211\u5728\u62a5\u793e\u505a\u4e8635\u5e74\u7684\u8bb0\u8005\uff09\uff0c\u5f53\u522b\u4eba\u544a\u8bc9\u4f60\uff0c\u4f60\u5e2e\u52a9\u4ed6\u4eec\u6539\u53d8\u4e86\u4ed6\u4eec\u7684\u751f\u6d3b\u65f6\uff0c\u6211\u611f\u5230\u975e\u5e38\u6b23\u6170\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>\u5728\u6211\u88ab\u6b63\u5f0f\u786e\u8bca\u4e4b\u524d\u7684\u51e0\u5341\u5e74\u91cc\uff0c\u4ee4\u4eba\u56f0\u60d1\u7684\u8eab\u4f53\u9650\u5236\u4fc3\u4f7f\u6211\u5bfb\u627e\u5176\u4ed6\u65b9\u5f0f\u6765\u6d3b\u8dc3\u8d77\u6765\uff0c\u5e76\u5728\u6237\u5916\u8010\u529b\u7ade\u6280\u8fd0\u52a8\u5458\u7fa4\u4f53\u4e2d\u505a\u51fa\u8d21\u732e\u3002  \u575a\u97e7\u4e0d\u62d4\u3001\u79ef\u6781\u8fd0\u52a8\u548c\u575a\u5f3a\u662f\u6211\u8eab\u4efd\u7684\u4e00\u90e8\u5206\uff0c\u53ea\u8981\u6211\u6709\u80fd\u529b\uff0c\u6211\u5c31\u4f1a\u52aa\u529b\u575a\u6301\u4e0b\u53bb\u3002  \u6211\u5e0c\u671b\u8fd9\u79cd\u5fc3\u6001\u80fd\u5e2e\u52a9\u6211\u9762\u5bf9\u672a\u6765\u7684\u4e00\u5207\u4e0d\u786e\u5b9a\u6027\u3002<\/p>\n<p><strong>\u60a8\u5e0c\u671b\u4e16\u754c\u4e86\u89e3 LGMD \u7684\u54ea\u4e9b\u65b9\u9762\uff1f<\/strong>:<\/p>\n<p>\u808c\u8089\u840e\u7f29\u75c7\u662f\u4e00\u79cd\u7f55\u89c1\u75be\u75c5\uff0c\u4e2a\u4f53\u5dee\u5f02\u6781\u5927\u3002  \u7531\u4e8e\u76ee\u524d\u8fd8\u6ca1\u6709\u6cbb\u6108\u7684\u65b9\u6cd5\uff0c\u836f\u7269\u516c\u53f8\u4e5f\u6ca1\u6709\u627e\u5230\u6cbb\u6108\u65b9\u6cd5\u7684\u7ecf\u6d4e\u52a8\u529b\uff0c\u56e0\u6b64\u8bca\u65ad\u7ed3\u679c\u5f80\u5f80\u5c31\u662f\u533b\u62a4\u4eba\u5458\u5bf9\u4f60\u7684\u5174\u8da3\u7684\u7ec8\u7ed3\u3002  \u5728\u529b\u6240\u80fd\u53ca\u7684\u8303\u56f4\u5185\u5bfb\u6c42\u652f\u6301\uff0c\u505a\u81ea\u5df1\u7684\u4ee3\u8a00\u4eba\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\u559c\u6b22\u8d8a\u91ce\u6ed1\u96ea\u3002  \u6211\u4eec\u5bb6\u6240\u5728\u7684\u6ed1\u96ea\u9053\u7cfb\u7edf\u8fde\u63a5\u7740 54 \u516c\u91cc\u957f\u7684\u7f8e\u56fd Birkebeiner \u6ed1\u96ea\u9053\uff0c\u6211\u5f88\u60f3\u4f53\u9a8c\u4e00\u4e0b\u5728\u8fd9\u6761\u7f8e\u4e3d\u7684\u68ee\u6797\u6ed1\u96ea\u9053\u7684\u4e18\u9675\u548c\u5c71\u8c37\u95f4\u4f18\u96c5\u6ed1\u884c\u7684\u5feb\u611f\u3002<\/p>\n<p>&nbsp;<\/p>\n<p>\u5982\u9700\u9605\u8bfb\u66f4\u591a \"LGMD \u7126\u70b9\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 <a href=\"https:\/\/www.lgmd-info.org\/zh\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSPOTLIGHT INTERVIEW\u201d \u00a0 Name:\u00a0 Darlene\u00a0\u00a0\u00a0 Age: \u00a0\u00a065 yrs. old [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1445,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[73],"class_list":["post-1446","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-non-dysferlin-miyoshi-myopathy-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: Darlene - LGMD Awareness Foundation<\/title>\n<meta name=\"robots\" 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