{"id":1282,"date":"2016-07-26T15:59:21","date_gmt":"2016-07-26T20:59:21","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1282"},"modified":"2016-07-26T15:59:21","modified_gmt":"2016-07-26T20:59:21","slug":"maram","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/ko\/individuals-with-lgmd-interviews\/2016\/07\/26\/maram\/","title":{"rendered":"LGMD \uac1c\uc778: \ub9c8\ub78c"},"content":{"rendered":"

07\/26\/2016 –\u00a0<\/strong>LGMD \"\uc2a4\ud3ec\ud2b8\ub77c\uc774\ud2b8 \uc778\ud130\ubdf0\"<\/p>\n

\uc774\ub984<\/strong>:\u00a0 Maram\u00a0\u00a0\u00a0 AGE<\/strong>: 26 years old\"LGMD2E<\/a><\/p>\n

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

LGMD \ud558\uc704 \uc720\ud615<\/strong>: LGMD2E<\/p>\n

 <\/p>\n

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

I was diagnosed with muscular dystrophy at the age of 10.\u00a0 When I was 26 years old, I received genetic confirmation of my LGMD2E diagnosis.<\/p>\n

\uccab \uc99d\uc0c1\uc740 \ubb34\uc5c7\uc774\uc5c8\ub098\uc694?<\/strong>:<\/p>\n

When I was 3 years old, my parents noticed that my gait was unsteady and it was difficult for me to stand up from the ground.<\/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\uc5d0 \uc800\ub9cc \uc788\uc2b5\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

There are so many challenges.\u00a0 Simple things for many people are my greatest challenges but going to the bathroom and changing my position from side to side while sleeping make me feel so weak.<\/p>\n

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

Well, in my country people know nothing about LGMD.\u00a0 I am trying every day to increase the awareness of the disease by social media.\u00a0 I have helped many patients in my country and in the Arab world to the genetic test to confirm their diagnosis and to get the equipment that we need to make life a little easier for us.\u00a0 I have also contacted my patients from around the world and we have become close friends.\u00a0 They are my greatest accomplishments.<\/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

I think it has made me stronger in one way or another.\u00a0 I have become more caring for the people around me. I appreciate every little blessing in my life including my great family.\u00a0 I have become closer to God.\u00a0 I think it changed me in a good way and I like who I am today.<\/p>\n

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

I want them to know that we are not so different form normal people.\u00a0\u00a0 What happened that a simple genetic error or mutation has caused me difficulty in moving while they can.\u00a0 The cause is not so complicated and if we understand that, we can find the treatment.<\/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

I would like to hug my parents so tightly and never let them go.\u00a0 I keep thinking how hard life would be without them.<\/p>\n

\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 \uc9c0\uc6d0\ud558\ub824\uba74 \ub2e4\uc74c \uc6f9\uc0ac\uc774\ud2b8\ub97c \ubc29\ubb38\ud558\uc138\uc694(https:\/\/www.lgmd-info.org\/spotlight-interviews).<\/p>","protected":false},"excerpt":{"rendered":"

07\/26\/2016 –\u00a0LGMD “Spotlight Interview” NAME:\u00a0 Maram\u00a0\u00a0\u00a0 AGE: 26 years old […]<\/p>","protected":false},"author":1,"featured_media":1281,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,62],"tags":[63],"class_list":["post-1282","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2e","tag-lgmd2e-palestine"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Maram - 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\/2016\/07\/26\/maram\/\" \/>\n<meta property=\"og:locale\" content=\"ko_KR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Maram - 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