{"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\/ko\/individuals-with-lgmd-interviews\/2017\/04\/08\/darlene\/","title":{"rendered":"LGMD \uac1c\uc778: Darlene"},"content":{"rendered":"<p><strong>LGMD \"\uc2a4\ud3ec\ud2b8\ub77c\uc774\ud2b8 \uc778\ud130\ubdf0\"<\/strong><\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p><strong>\uc774\ub984<\/strong>:  Darlene\u00a0\u00a0\u00a0 <strong>\ub098\uc774<\/strong>65\uc138<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>\uad6d\uac00<\/strong>:   \ubbf8\uad6d<\/p>\n<p><strong>LGMD \ud558\uc704 \uc720\ud615<\/strong>:    \ube44-\ub514\uc2a4\ud398\ub9b0 \ubbf8\uc694\uc2dc \uadfc\ubcd1\uc99d<\/p>\n<p>&nbsp;<\/p>\n<p><strong>\uba87 \uc0b4\uc5d0 \uc9c4\ub2e8\ubc1b\uc73c\uc168\ub098\uc694?<\/strong>:<\/p>\n<p>\uc800\ub294 64\uc138\uc5d0 \uc9c4\ub2e8\uc744 \ubc1b\uc558\uc2b5\ub2c8\ub2e4.<\/p>\n<p><strong>\uccab \uc99d\uc0c1\uc740 \ubb34\uc5c7\uc774\uc5c8\ub098\uc694?<\/strong>:<\/p>\n<p>\ub3cc\uc774\ucf1c\ubcf4\uba74 40\ub300 \ub610\ub294 \uadf8 \uc774\uc804\ubd80\ud130 \uc99d\uc0c1\uc774 \uc2dc\uc791\ub418\uc5c8\ub2e4\ub294 \uac83\uc744 \uc774\uc81c\uc57c \uae68\ub2ec\uc558\uc2b5\ub2c8\ub2e4.  \uc800\ub294 \ud56d\uc0c1 \ud65c\ub3d9\uc801\uc778 \uc0dd\ud65c\uc744 \ud574\uc654\uc9c0\ub9cc \uc138\uc6d4\uc774 \ud750\ub974\uba74\uc11c \ub2ec\ub9ac\uae30, \uc2a4\ud0a4, \uc2a4\ucf00\uc774\ud2b8 \uac19\uc740 \uc6b4\ub3d9\uc774 \uc810\uc810 \uc5b4\ub824\uc6cc\uc838\uc11c \uc790\uc804\uac70, \ucf00\ud2c0\ubca8, \uc6e8\uc774\ud2b8, \ud06c\ub85c\uc2a4\ud54f \uac19\uc740 \ub2e4\ub978 \uc6b4\ub3d9\uc744 \ud558\uac8c \ub418\uc5c8\uc2b5\ub2c8\ub2e4.  \uc800\ub294 \ub808\uc774\ub178 \uc99d\uc0c1\uc5d0 \ub300\ucc98\ud558\uae30 \uc704\ud574 \uc637\uc744 \ub530\ub73b\ud558\uac8c \uc785\uc5c8\uc2b5\ub2c8\ub2e4.  60\ub300 \ucd08\ubc18\uc5d0 \uc885\uc544\ub9ac\uc5d0 \ub208\uc5d0 \ub744\ub294 \uadfc\uc721 \uc18c\uc2e4\uc774 \ub098\ud0c0\ub098\uba74\uc11c \uc9c4\ub2e8\uc744 \ubc1b\uae30 \uc704\ud55c 1\ub144\uac04\uc758 \uc5ec\uc815\uc774 \uc2dc\uc791\ub418\uc5c8\uc2b5\ub2c8\ub2e4.  \uadf8 \ubb34\ub835\uc5d0\ub294 \uc591\ucabd \ube44\ubcf5\uadfc\uc758 80-90%\uac00 \uc9c0\ubc29\uc73c\ub85c \ub300\uccb4\ub418\uc5b4 \uc788\uc5c8\uc2b5\ub2c8\ub2e4.<\/p>\n<p><strong>\ub2e4\ub978 \uac00\uc871 \uc911\uc5d0 LGMD\ub97c \uc553\uace0 \uc788\ub294 \uc0ac\ub78c\uc774 \uc788\ub098\uc694?<\/strong><\/p>\n<p>\uc544\ub2c8\uc694, \ud558\uc9c0\ub9cc \ub450 \uc790\ub9e4\uac00 \uc18c\uc544 \ub2f9\ub1e8\ubcd1\uc744 \uc553\uc558\uac70\ub098 \uc553\uace0 \uc788\uc2b5\ub2c8\ub2e4.  \ud55c \uba85\uc740 53\uc138\uc5d0 \ub2f9\ub1e8\ubcd1\uc73c\ub85c \uc778\ud55c \uc2ec\uc7a5 \ud569\ubcd1\uc99d\uc73c\ub85c \uc0ac\ub9dd\ud588\uc2b5\ub2c8\ub2e4.  \ub2e4\ub978 \ud55c \uba85\uc740 \ud604\uc7ac 58\uc138\ub85c \uac74\uac15\uc774 \ucde8\uc57d\ud55c \uc0c1\ud0dc\uc774\uba70 39\uc138\uc5d0 \uc2e0\uc7a5\/\ucdcc\uc7a5 \uc774\uc2dd\uc218\uc220\uc744 \ubc1b\uc558\uc2b5\ub2c8\ub2e4.<\/p>\n<p><strong>LGMD\uc640 \ud568\uaed8 \uc0dd\ud65c\ud558\uba74\uc11c \uac00\uc7a5 \uc5b4\ub824\uc6b4 \uc810\uc740 \ubb34\uc5c7\uc778\uac00\uc694?<\/strong>:<\/p>\n<p>\ud06c\ub85c\uc2a4\ud54f \uccb4\uc721\uad00\uc758 \uacf5\ub3d9 \uc18c\uc720\uc8fc\uc778 \uc800\ub294 \uac74\uac15\ud55c \uadfc\uc721\uc744 \ud2bc\ud2bc\ud558\uace0 \uc6c0\uc9c1\uc77c \uc218 \uc788\uc744 \ub9cc\ud07c \uc5f4\uc2ec\ud788 \uc6b4\ub3d9\ud558\uba74\uc11c\ub3c4 \uc704\ud5d8\uc5d0 \ucc98\ud55c \uadfc\uc721\uc744 \ud30c\uad34\ud560 \uc815\ub3c4\ub85c \ubb34\ub9ac\ud558\uc9c0 \uc54a\ub294 \uc801\uc808\ud55c \uade0\ud615\uc744 \ucc3e\uae30 \uc704\ud574 \ub04a\uc784\uc5c6\uc774 \ub178\ub825\ud558\uace0 \uc788\uc2b5\ub2c8\ub2e4.  \uc9c0\uae08\uae4c\uc9c0\ub294 \uc9c8\ubcd1\uc774 \uc81c \uc0b6\uc5d0 \ubbf8\uce58\ub294 \uc601\ud5a5\uc774 \ubbf8\ubbf8\ud574\uc11c \ud3c9\uade0 65\uc138\ubcf4\ub2e4 \ub354 \uc80a\uac8c \ubcf4\uc774\uace0, \ub290\ub07c\uace0, \uc6c0\uc9c1\uc774\uace0 \uc788\uc2b5\ub2c8\ub2e4.  \uc800\ub294 \ub9e4\uc77c \uc81c\uac00 \ud560 \uc218 \uc788\ub294 \uc77c\uc5d0 \uc9d1\uc911\ud558\ub824\uace0 \ub178\ub825\ud558\uba70 \uc800\ubfd0\ub9cc \uc544\ub2c8\ub77c \ubaa8\ub4e0 \uc0ac\ub78c\uc774 \ub178\ud654\ub77c\ub294 \uc9c4\ud589\uc131 \ud1f4\ud589\uc131 \uc9c8\ud658\uc5d0 \uc9c1\uba74\ud574 \uc788\ub2e4\ub294 \uc0ac\uc2e4\uc744 \uc0c1\uae30\ud569\ub2c8\ub2e4.<\/p>\n<p><strong>\uac00\uc7a5 \ud070 \uc131\uacfc\ub294 \ubb34\uc5c7\uc778\uac00\uc694?<\/strong>:<\/p>\n<p>\ub2f9\ub1e8\ubcd1\uc744 \uc553\ub294 \uc790\ub9e4\uc640 \ud568\uaed8 \uc790\ub77c\uba74\uc11c \uc88b\uc740 \uc601\uc591 \uc12d\ucde8\uc640 \uaddc\uce59\uc801\uc778 \uc6b4\ub3d9\uc758 \uc911\uc694\uc131\uc5d0 \ub300\ud574 \uae4a\uc740 \uc778\uc0c1\uc744 \ubc1b\uc558\uc2b5\ub2c8\ub2e4.  \uc800\ub294 \uc81c\uac00 \uc785\uc5d0 \ub123\ub294 \uc74c\uc2dd\uc774 \uc911\uc694\ud558\uace0, \uc5b4\ub5a4 \uc9c8\ubcd1\uc774\ub4e0 \ucda9\ubd84\ud55c \uc218\uba74\uacfc \uc2a4\ud2b8\ub808\uc2a4 \ud68c\ubcf5\uc774 \ud544\uc218\uc801\uc774\ub77c\ub294 \uac83\uc744 \uc798 \uc54c\uace0 \uc788\uc2b5\ub2c8\ub2e4.  \uac74\uac15\ud55c \uc2b5\uad00\uc774 \uc99d\uc0c1\uc744 \ucd5c\uc18c\ud654\ud558\ub294 \ub370 \ub3c4\uc6c0\uc774 \ub418\ub294\uc9c0 \ud655\uc2e4\ud558\uac8c \uc54c \uc218\ub294 \uc5c6\uc9c0\ub9cc, \uc800\ub294 \uadf8\ub7f0 \uc2b5\uad00\uc774 \ub3c4\uc6c0\uc774 \ub41c\ub2e4\uace0 \ubbff\uace0 \uc788\uc73c\uba70 \uc55e\uc73c\ub85c\ub3c4 \uac00\ub2a5\ud55c \ud55c \uc801\uadf9\uc801\uc73c\ub85c \ub178\ub825\ud560 \uac83\uc785\ub2c8\ub2e4.  \ucf54\uce58\ub85c\uc11c \uc800\ub294 \ud6cc\ub96d\ud55c \uac74\uac15 \uc2b5\uad00\uc758 \ubaa8\ubc94\uc774 \ub418\uace0 \ud68c\uc6d0\ub4e4\uacfc \uae34\ubc00\ud788 \ud611\ub825\ud558\uc5ec \ud68c\uc6d0\ub4e4\uc774 \uc774\ub7ec\ud55c \ud61c\ud0dd\uc744 \uc9c1\uc811 \ub204\ub9b4 \uc218 \uc788\ub3c4\ub85d \ub3d5\uace0 \uc788\uc2b5\ub2c8\ub2e4.  \uc800\ub294 35\ub144\uac04 \uc2e0\ubb38 \uae30\uc790\ub85c \uc77c\ud558\ub2e4\uac00 60\uc138\uc5d0 \ud06c\ub85c\uc2a4\ud54f \ucf54\uce58\uac00 \ub418\uc5c8\ub294\ub370, \ub2e4\ub978 \uc0ac\ub78c\ub4e4\uc774 \uc81c \ucf54\uce58\uac00 \uadf8\ub4e4\uc758 \uc0b6\uc744 \ub354 \ub098\uc740 \ubc29\ud5a5\uc73c\ub85c \ubcc0\ud654\uc2dc\ud0a4\ub294 \ub370 \ub3c4\uc6c0\uc774 \ub418\uc5c8\ub2e4\uace0 \ub9d0\ud558\ub294 \uac83\uc744 \ub4e4\uc73c\uba74 \ubfcc\ub4ef\ud569\ub2c8\ub2e4.<\/p>\n<p><strong>LGMD\uac00 \uc9c0\uae08\uc758 \uc790\uc2e0\uc744 \ub9cc\ub4dc\ub294 \ub370 \uc5b4\ub5a4 \uc601\ud5a5\uc744 \ubbf8\ucce4\ub098\uc694?<\/strong><\/p>\n<p>\uacf5\uc2dd\uc801\uc778 \uc9c4\ub2e8\uc744 \ubc1b\uae30 \uc218\uc2ed \ub144 \uc804, \uc758\uc544\ud55c \uc2e0\uccb4\uc801 \ud55c\uacc4\ub85c \uc778\ud574 \uc800\ub294 \uacbd\uc7c1\uc801\uc778 \uc57c\uc678 \uc9c0\uad6c\ub825 \uc6b4\ub3d9 \uc120\uc218 \ucee4\ubba4\ub2c8\ud2f0\uc5d0\uc11c \ud65c\ub3d9\ud558\uba70 \uae30\uc5ec\ud560 \uc218 \uc788\ub294 \ub2e4\ub978 \ubc29\ubc95\uc744 \ucc3e\uc544\uc57c \ud588\uc2b5\ub2c8\ub2e4.  \ud0c4\ub825 \uc788\uace0 \uc2e0\uccb4\uc801\uc73c\ub85c \ud65c\ub3d9\uc801\uc774\uba70 \uac15\ud558\ub2e4\ub294 \uac83\uc740 \uc81c \uc815\uccb4\uc131\uc758 \uc77c\ubd80\uc774\uba70, \uc81c\uac00 \ud560 \uc218 \uc788\ub294 \ud55c \uacc4\uc18d \uc720\uc9c0\ud558\ub824\uace0 \ub178\ub825\ud560 \uac83\uc785\ub2c8\ub2e4.  \uc774\ub7ec\ud55c \ub9c8\uc74c\uac00\uc9d0\uc774 \ubbf8\ub798\uc5d0 \uc5b4\ub5a4 \ubd88\ud655\uc2e4\uc131\uc774 \ub2e5\uccd0\uc624\ub354\ub77c\ub3c4 \uc774\ub97c \uadf9\ubcf5\ud558\ub294 \ub370 \ub3c4\uc6c0\uc774 \ub420 \uac83\uc774\ub77c \ubbff\uc2b5\ub2c8\ub2e4.<\/p>\n<p><strong>LGMD\uc5d0 \ub300\ud574 \uc804 \uc138\uacc4\uc5d0 \uc54c\ub9ac\uace0 \uc2f6\uc740 \ub0b4\uc6a9<\/strong>:<\/p>\n<p>\uadfc\uc774\uc601\uc591\uc99d\uc740 \uac1c\uc778\ucc28\uac00 \ub9e4\uc6b0 \ud070 \ud76c\uadc0 \uc9c8\ud658\uc785\ub2c8\ub2e4.  \ub610\ud55c \uce58\ub8cc\ubc95\uc774 \uc5c6\uace0 \uc81c\uc57d\ud68c\uc0ac\uac00 \uce58\ub8cc\uc81c\ub97c \uac1c\ubc1c\ud560 \uc7ac\uc815\uc801 \uc778\uc13c\ud2f0\ube0c\uac00 \uac70\uc758 \uc5c6\uae30 \ub54c\ubb38\uc5d0 \uc9c4\ub2e8\uc744 \ubc1b\ub294 \uac83\uc73c\ub85c \uc758\ub8cc \uc804\ubb38\uac00\uc758 \uad00\uc2ec\uc740 \ub05d\ub098\ub294 \uacbd\uc6b0\uac00 \ub9ce\uc2b5\ub2c8\ub2e4.  \uac00\ub2a5\ud55c \uacf3\uc5d0\uc11c \uc9c0\uc6d0\uc744 \ubc1b\uace0 \uc2a4\uc2a4\ub85c \uc639\ud638\uc790\uac00 \ub418\uc138\uc694.<\/p>\n<p><strong>\ub0b4\uc77c LGMD\uac00 \"\uc644\uce58\"\ub420 \uc218 \uc788\ub2e4\uba74 \uac00\uc7a5 \uba3c\uc800 \ud558\uace0 \uc2f6\uc740 \uc77c\uc740 \ubb34\uc5c7\uc778\uac00\uc694?<\/strong>:<\/p>\n<p>\ud06c\ub85c\uc2a4 \ucee8\ud2b8\ub9ac \uc2a4\ud0a4\ub97c \uc990\uae30\uace0 \uc2f6\uc5b4\uc694.  \uc800\ud76c\ub294 54K \uc544\uba54\ub9ac\uce78 \ubc84\ucf00\ubc14\uc774\ub108 \uc2a4\ud0a4 \ud2b8\ub808\uc77c\uacfc \uc5f0\uacb0\ub41c \ud2b8\ub808\uc77c \uc2dc\uc2a4\ud15c\uc5d0 \uc0b4\uace0 \uc788\ub294\ub370, \uc232\uc774 \uc6b0\uac70\uc9c4 \uc774 \uc544\ub984\ub2e4\uc6b4 \ud2b8\ub808\uc77c\uc758 \uc5b8\ub355\uacfc \uacc4\uace1\uc744 \ub530\ub77c \uc6b0\uc544\ud558\uac8c \ud65c\uac15\ud558\ub294 \uc2a4\ub9b4\uc744 \uacbd\ud5d8\ud558\uace0 \uc2f6\uc5b4\uc694.<\/p>\n<p>&nbsp;<\/p>\n<p>\ub354 \ub9ce\uc740 'LGMD \uc2a4\ud3ec\ud2b8\ub77c\uc774\ud2b8 \uc778\ud130\ubdf0'\ub97c \uc77d\uac70\ub098 \ub2e4\uc74c \uc778\ud130\ubdf0\uc5d0 \ucd9c\uc5f0\uc744 \uc2e0\uccad\ud558\ub824\uba74 \ub2e4\uc74c \uc6f9\uc0ac\uc774\ud2b8\ub97c \ubc29\ubb38\ud558\uc138\uc694: <a href=\"https:\/\/www.lgmd-info.org\/ko\/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\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.lgmd-info.org\/ko\/individuals-with-lgmd-interviews\/2017\/04\/08\/darlene\/\" \/>\n<meta property=\"og:locale\" content=\"ko_KR\" \/>\n<meta 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content=\"image\/png\" \/>\n<meta name=\"author\" content=\"dooley\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@LgmdAwareness\" \/>\n<meta name=\"twitter:site\" content=\"@LgmdAwareness\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"dooley\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"3 minutes\" \/>\n<script type=\"application\/ld+json\" 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