{"id":5544,"date":"2021-10-17T02:17:57","date_gmt":"2021-10-17T02:17:57","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5544"},"modified":"2024-02-09T14:23:59","modified_gmt":"2024-02-09T14:23:59","slug":"individual-with-lgmd-jade","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/ko\/individuals-with-lgmd-interviews\/2021\/10\/17\/individual-with-lgmd-jade\/","title":{"rendered":"LGMD\ub97c \uc0ac\uc6a9\ud558\ub294 \uac1c\uc778: Jade"},"content":{"rendered":"

\"<\/p>\n

LGMD \"\uc2a4\ud3ec\ud2b8\ub77c\uc774\ud2b8 \uc778\ud130\ubdf0\"<\/strong><\/h3>\n

\uc774\ub984<\/strong>: Jade<\/p>\n

\ub098\uc774<\/strong>20\uc138<\/p>\n

\uad6d\uac00<\/strong>: \ubbf8\uad6d<\/p>\n

LGMD \ud558\uc704 \uc720\ud615<\/strong>: LGMD 2A\/R1 \uce7c\ud30c\uc778 3 \uad00\ub828<\/p>\n

\uba87 \uc0b4\uc5d0 \uc9c4\ub2e8\ubc1b\uc73c\uc168\ub098\uc694?<\/strong>?<\/p>\n

\uc800\ub294 2021\ub144 3\uc6d4\uc5d0 \uacf5\uc2dd\uc801\uc73c\ub85c \uc9c4\ub2e8\uc744 \ubc1b\uc558\uae30 \ub54c\ubb38\uc5d0 \uc774 \ubaa8\ub4e0 \uac83\uc774 \uc800\uc5d0\uac8c\ub294 \uc544\uc9c1 \ub0af\uc124\uae30\ub9cc \ud569\ub2c8\ub2e4.<\/p>\n

\uccab \uc99d\uc0c1\uc740 \uc5b4\ub5a4 \uac83\uc774\uc5c8\ub098\uc694?<\/strong><\/p>\n

\ucc98\uc74c \uc99d\uc0c1\uc744 \ubc1c\uacac\ud588\uc744 \ub54c\ub294 \ub2e8\uc21c\ud788 \ud0c8\uc218 \uc99d\uc138\ub77c\uace0 \uc0dd\uac01\ud588\uc2b5\ub2c8\ub2e4. \uae30\uc6b4\uc774 \uc5c6\uace0 \ub2e4\ub9ac\uac00 \uc824\ub9ac\ucc98\ub7fc \ubb34\uac81\uace0 \uc5c9\ub369\uc774\uc5d0 \ud1b5\uc99d\uc774 \ub290\uaef4\uc84c\uc5b4\uc694. \uc774\uc81c \uc81c \uc9c4\ub2e8\uc744 \uc54c\uace0 \ub098\ub2c8 12\uc0b4 \ub54c\ubd80\ud130\uc758 \uc99d\uc0c1\uc744 \ub418\ub3cc\uc544\ubcfc \uc218 \uc788\uc5c8\uc2b5\ub2c8\ub2e4. \uc800\ub294 \uc18c\ud504\ud2b8\ubcfc\uc744 \ud588\ub294\ub370 \uc544\ubb34\ub9ac \ub178\ub825\ud574\ub3c4 \ub2e4\ub9ac\uac00 \ube68\ub9ac \ub2ec\ub9b4 \uc218 \uc5c6\uc5c8\uc2b5\ub2c8\ub2e4. \ub610\ud55c \ud56d\uc0c1 \uc885\uc544\ub9ac\uac00 \ube44\uc815\uc0c1\uc801\uc73c\ub85c \ucef8\ub294\ub370, \uc774\uc81c\ub294 \ub300\ud1f4\uc0ac\ub450\uadfc\uc758 \uadfc\ub825 \ubd80\uc871\uc73c\ub85c \uc778\ud574 \ubc1c\uc0dd\ud560 \uc218 \uc788\ub2e4\ub294 \uac83\uc744 \uc54c\uc558\uc2b5\ub2c8\ub2e4.<\/p>\n

\ub2e4\ub978 \uac00\uc871 \uc911\uc5d0 LGMD\ub97c \uc553\uace0 \uc788\ub294 \uc0ac\ub78c\uc774 \uc788\ub098\uc694?<\/strong><\/p>\n

\uc544\ub2c8\uc694, \uac00\uc871 \uc911 LGMD2A\/R1\uc744 \uc0ac\uc6a9\ud558\ub294 \uc0ac\ub78c\uc740 \uc800\ubfd0\uc785\ub2c8\ub2e4.<\/p>\n

LGMD\uc640 \ud568\uaed8 \uc0dd\ud65c\ud558\uba74\uc11c \uac00\uc7a5 \uc5b4\ub824\uc6b4 \uc810\uc740 \ubb34\uc5c7\uc778\uac00\uc694?<\/strong>?<\/p>\n

\uacc4\ub2e8\uc740 \uc81c \ubc1c\ubaa9\uc744 \ub9ce\uc774 \uc7a1\uc2b5\ub2c8\ub2e4. \uc5ec\uc804\ud788 \uacc4\ub2e8\uc744 \uc624\ub97c \uc218\ub294 \uc788\uc9c0\ub9cc \ub108\ubb34 \ub9ce\uc740 \ub178\ub825\uacfc \uc5d0\ub108\uc9c0\uac00 \ud544\uc694\ud569\ub2c8\ub2e4. \uadf8\ub9cc\ud55c \uac00\uce58\uac00 \uc5c6\uc8e0. \ub610\ud55c \uc694\ub9ac\ud560 \ub54c \uc549\uc544\uc11c \uc274 \uc218 \uc788\ub294 \uc758\uc790\ub97c \ub9c8\ub828\ud558\uace0, \uc544\uc774\ub4e4\uc744 \uc548\ub294 \ub300\uc2e0 \ubc14\ub2e5\uc5d0 \uc549\uc544 \uc548\uace0, \ud558\ub8e8\uc5d0 \ud558\ub294 \uc77c\uc758 \uc218\ub97c \uc81c\ud55c\ud558\ub294 \ub4f1 \uc77c\uc0c1\uc0dd\ud65c\uc744 \uc870\uc815\ud558\ub294 \ubc29\ubc95\uc744 \ubc30\uc6cc\uc57c \ud569\ub2c8\ub2e4. \uc81c\uac00 \uacaa\uc740 \uac00\uc7a5 \ud070 \uc7a5\uc560\ubb3c\uc740 \uc804\ub3d9 \uc758\uc790\uc5d0 \ub300\ud55c \uc815\uc2e0\uc801 \uc7a5\uc560\ubb3c\uc785\ub2c8\ub2e4. \uc804\ub3d9 \uc758\uc790\ub97c \uc0ac\uc6a9\ud574\uc57c \ud55c\ub2e4\ub294 \uac83\uc740 \uc54c\uc9c0\ub9cc \uc544\uc9c1 \uc81c \uc9c4\ub2e8\uc744 \ubc1b\uc544\ub4e4\uc774\uc9c0 \ubabb\ud558\ub294 \uc815\uc2e0\uc801 \uc7a5\ubcbd\uc774 \uc788\uc2b5\ub2c8\ub2e4.<\/p>\n

\uac00\uc7a5 \ud070 \uc131\uacfc\ub294 \ubb34\uc5c7\uc778\uac00\uc694?<\/strong><\/p>\n

\uc81c \uc778\uac04\uad00\uacc4\uc640 \uc5ec\uc804\ud788 \uae0d\uc815\uc801\uc778 \uc778\uc0dd\uad00\uc744 \uac00\uc9c0\uace0 \uc788\uc2b5\ub2c8\ub2e4. \uace0\ub4f1\ud559\uad50\ub97c \uc878\uc5c5\ud588\uc9c0\ub9cc \uadf8 \ud6c4 \uc9c4\ub2e8\uc744 \ubc1b\ub294 \uc5b4\ub824\uc6c0\uc744 \uacaa\uc5c8\uae30 \ub54c\ubb38\uc5d0 \uc544\uc9c1 \ub300\ud559\uc5d0 \uc9c4\ud559\ud558\uc9c0\ub294 \ubabb\ud588\uc9c0\ub9cc \uadf8\uac8c \uc81c \ubaa9\ud45c\uc785\ub2c8\ub2e4.<\/p>\n

LGMD\uac00 \uc9c0\uae08\uc758 \uc790\uc2e0\uc744 \ub9cc\ub4dc\ub294 \ub370 \uc5b4\ub5a4 \uc601\ud5a5\uc744 \ubbf8\ucce4\ub098\uc694?<\/strong><\/p>\n

\ub355\ubd84\uc5d0 \uc2a4\uc2a4\ub85c\ub97c \ub354 \uc798 \uc778\uc2dd\ud558\uace0 \uc2a4\uc2a4\ub85c \uad50\uc721\ud560 \uc218 \uc788\ub294 \ub2a5\ub825\uc774 \uc0dd\uacbc\uc5b4\uc694. \uc774\uc81c \uc81c \ubab8\uacfc \ub354 \uc798 \uc18c\ud1b5\ud558\uac8c \ub418\uc5c8\uace0 \ud6a1\ubb38\uadfc\uc735\ud574\uc99d\uc5d0 \uac78\ub838\ub294\uc9c0, \uc77c\uc774 \uc798 \uc548 \ud480\ub9ac\ub294\uc9c0, \uc544\ub2c8\uba74 \uadf8\ub0e5 \uc26c\uc5b4\uc57c \ud558\ub294\uc9c0 \uc54c \uc218 \uc788\uac8c \ub418\uc5c8\uc2b5\ub2c8\ub2e4. LGMD\uc5d0 \ub300\ud55c \uc5f0\uad6c\uac00 \ubd80\uc871\ud558\uae30 \ub54c\ubb38\uc5d0 \uc790\uac00 \uad50\uc721\uacfc \uc639\ud638\uac00 \ub9ce\uc774 \uc774\ub8e8\uc5b4\uc9c0\uace0 \uc788\uc2b5\ub2c8\ub2e4. \uc800\ub294 \ubc18 \uc2dc\uace8 \uc9c0\uc5ed\uc5d0 \uc0b4\uace0 \uc788\uc5b4\uc11c \uc5b4\ub5a4 \uc758\uc0ac\ub3c4 \uc800\ub97c \uc704\ud574 \ubb34\uc5c7\uc744 \ud574\uc57c \ud558\ub294\uc9c0, \uc81c\uac00 \uc5b4\ub5a4 \ubcd1\uc5d0 \uac78\ub838\ub294\uc9c0\uc5d0 \ub300\ud55c \ub2e8\uc11c\uac00 \uc5c6\uc5c8\uc2b5\ub2c8\ub2e4. \uc774\uc81c\ub294 \uc8fc\uce58\uc758\uc5d0\uac8c \uc804\ud654\ud574\uc11c \ubb34\uc2a8 \uc77c\uc774 \uc77c\uc5b4\ub098\uace0 \uc788\ub294\uc9c0 \uc774\uc57c\uae30\ud558\uba74 \uadf8\uc5d0 \ub530\ub77c \uce58\ub8cc\ud574 \uc904 \uc218 \uc788\ub294 \ub2e8\uacc4\uc5d0 \uc774\ub974\ub800\uc2b5\ub2c8\ub2e4.<\/p>\n

LGMD\uc5d0 \ub300\ud574 \uc804 \uc138\uacc4\uc5d0 \uc54c\ub9ac\uace0 \uc2f6\uc740 \ub0b4\uc6a9<\/strong>?<\/p>\n

LGMD\ub294 \ubaa8\ub4e0 \uc0ac\ub78c\uc5d0\uac8c \ub611\uac19\uc774 \ub098\ud0c0\ub098\uc9c0 \uc54a\uc2b5\ub2c8\ub2e4. \ubaa8\ub4e0 \uc0ac\ub78c\uc774 \ubcf4\ud589\uc774 \uac00\ub2a5\ud55c \uac83\ub3c4 \uc544\ub2c8\uace0 \ubaa8\ub4e0 \uc0ac\ub78c\uc774 \ud720\uccb4\uc5b4\ub97c \ud0c0\ub294 \uac83\ub3c4 \uc544\ub2d9\ub2c8\ub2e4. \ubaa8\ub4e0 \uc0ac\ub78c\uc774 \uc870\uae30 \uc9c4\ub2e8\uc744 \ubc1b\ub294 \uac83\uc740 \uc544\ub2c8\uba70, \uc5b4\ub5a4 \uc0ac\ub78c\uc740 \uc9c4\ub2e8\uc744 \ubc1b\uc9c0 \ubabb\ud558\ub294 \uac83\uacfc \ub9c8\ucc2c\uac00\uc9c0\uc785\ub2c8\ub2e4(\uc9c0\uae08\uc740 \ub354 \uc26c\uc6cc\uc84c\uc9c0\ub9cc). \ubaa8\ub4e0 \uc0ac\ub78c\uc774 \uc9c4\ub2e8\uc744 \uc798 \ubc1b\uc544\ub4e4\uc774\uace0 \uc790\uc2e0\uac10 \uc788\uac8c \uc55e\uc73c\ub85c \ub098\uc544\uac00\ub294 \uac83\uc740 \uc544\ub2c8\uba70, \uc9c4\ub2e8\uc73c\ub85c \uc778\ud574 \ubaa8\ub4e0 \uc0ac\ub78c\uc774 \uc18c\uc6a9\ub3cc\uc774\uc5d0 \ube60\uc9c0\ub294 \uac83\ub3c4 \uc544\ub2d9\ub2c8\ub2e4. \ub2e4\ub978 \uc0ac\ub78c\uc774 \uc2e0\uccb4\uc801, \uc815\uc2e0\uc801\uc73c\ub85c \uc5b4\ub5a4 \uc77c\uc744 \uacaa\uace0 \uc788\ub294\uc9c0 \ub0b4\uac00 \ub2e4 \uc548\ub2e4\uace0 \uac00\uc815\ud558\uc9c0 \ub9c8\uc138\uc694.<\/p>\n

\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

\uac00\uc7a5 \uba3c\uc800 \ud558\uace0 \uc2f6\uc740 \uac83\uc740 \ubaa8\ud5d8\uc801\uc778 \ud734\uac00\/\uc5ec\ud589\uc744 \ub5a0\ub098\ub294 \uac83\uc785\ub2c8\ub2e4. \uc9c0\uae08\uc740 \ud604\uc2e4\uc801\uc73c\ub85c \ubd88\uac00\ub2a5\ud558\uc9c0\ub9cc \uadf8\ub79c\ub4dc \uce90\ub144, \uc694\uc138\ubbf8\ud2f0, \uc560\ud314\ub798\uce58\uc544 \uc0b0\ub9e5\uc758 \uac00\uc7a5 \ub192\uc740 \uc9c0\uc810, \ud558\uc640\uc774 \ud654\uc0b0\uc740 \ud56d\uc0c1 \uac00\ubcf4\uace0 \uc2f6\uc5b4\uc694.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5545,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,82,16],"class_list":["post-5544","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","tag-lgmd2a-calpainopathy","tag-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Jade - 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