{"id":1341,"date":"2016-09-29T12:26:02","date_gmt":"2016-09-29T17:26:02","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1341"},"modified":"2016-09-29T12:26:02","modified_gmt":"2016-09-29T17:26:02","slug":"michele","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2016\/09\/29\/michele\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Michele"},"content":{"rendered":"<p>LGMD \"SPOT I\u015eI\u011eI R\u00d6PORTAJI\"<\/p>\n<p>&nbsp;<\/p>\n<p>ADI:  Michele \u00a0\u00a0<strong>YA\u015e<\/strong>: 52 Ya\u015f\u0131nda. Ya\u015fl\u0131<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2016\/09\/LGMD2A-Michele-W.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1340 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\/2016\/09\/LGMD2A-Michele-W-300x169.png\" alt=\"lgmd2a-michele-w\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>\u00dcLKE<\/strong>:  Birle\u015fik Devletler<\/p>\n<p><strong>LGMD Alt Tipi<\/strong>:   LGMD2A - Kalpainopati<\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p><strong>KA\u00c7 YA\u015eINDA TE\u015eHIS KONULDU?<\/strong>:<\/p>\n<p>Bana ilk olarak 25 ya\u015f\u0131ndayken tan\u0131mlanmam\u0131\u015f bir kas distrofisi te\u015fhisi konuldu.  LGMD2A te\u015fhisimin onay\u0131n\u0131 43 ya\u015f\u0131nda ald\u0131m.<\/p>\n<p><strong>\u0130LK BELIRTILERINIZ NEYDI?<\/strong><\/p>\n<p>Onlu ya\u015flar\u0131m\u0131n sonlar\u0131nda y\u00fcr\u00fcrken garip bir paytak y\u00fcr\u00fcy\u00fc\u015f geli\u015ftirdim ve 20'li ya\u015flar\u0131m\u0131n ba\u015f\u0131nda topallamaya ba\u015flad\u0131m.<\/p>\n<p><strong>LGMD HASTASI OLAN BA\u015eKA AILE \u00dcYELERINIZ VAR MI? <\/strong><\/p>\n<p>Evet, karde\u015flerden birinde LGMD2A var ama di\u011ferinde yok.<\/p>\n<p><strong>LGMD I\u0307LE YA\u015eAMANIN EN B\u00dcY\u00dcK ZORLU\u011eU OLARAK NEYI\u0307 G\u00d6R\u00dcYORSUNUZ<\/strong>:<\/p>\n<p>A\u00e7\u0131k konu\u015fmak gerekirse, en k\u00f6t\u00fc k\u0131sm\u0131 umumi tuvaletlerle u\u011fra\u015fmak \u00e7\u00fcnk\u00fc tekerlekli sandalyeye transfer fiziksel olarak zor ve tuvaletler her zaman yeterli \u015fekilde ayarlanm\u0131yor, bu y\u00fczden d\u0131\u015far\u0131dayken su veya kahve i\u00e7mek konusunda her zaman endi\u015feliyim.  Bazen hayat\u0131m s\u0131v\u0131 y\u00f6netimi etraf\u0131nda d\u00f6n\u00fcyormu\u015f gibi hissediyorum!<\/p>\n<p><strong>EN B\u00dcY\u00dcK BA\u015eARINIZ NEDIR<\/strong>:<\/p>\n<p>Profesyonel olarak en b\u00fcy\u00fck ba\u015far\u0131m, LGMD2A'y\u0131 (Calpainopathy olarak da bilinir) tedavi etmek i\u00e7in y\u00fcksek potansiyelli ara\u015ft\u0131rmalara fon sa\u011flamaya ve k\u00fcresel toplumu hastal\u0131k hakk\u0131nda e\u011fitmeye odaklanan kar amac\u0131 g\u00fctmeyen bir grup olan Coalition to Cure Calpain 3'\u00fcn (C3) olu\u015fturulmas\u0131 ve y\u00f6netilmesindeki kat\u0131l\u0131m\u0131md\u0131r.<\/p>\n<p>Ki\u015fisel olarak en son ba\u015far\u0131m New York Times Mini Bulmacas\u0131n\u0131 15 saniyede \u00e7\u00f6zmek oldu,<br \/>\n<strong>LGMD BUG\u00dcN OLDU\u011eUNUZ KI\u015eI OLMANIZDA SIZI NASIL ETKILEDI?<\/strong><\/p>\n<p>\u0130yi taraf\u0131ndan bakarsak, bu durum beni daha empatik hale getirdi ve \u00e7ocuklar\u0131ma bir \u015feylerden hayal k\u0131r\u0131kl\u0131\u011f\u0131na u\u011frad\u0131\u011f\u0131n\u0131zda harekete ge\u00e7menin \u00f6nemli oldu\u011funu g\u00f6sterme f\u0131rsat\u0131 verdi.  \u015eikayet etmeyin; de\u011fi\u015fim i\u00e7in bir arac\u0131 olun.<\/p>\n<p>\u0130\u015fin k\u00f6t\u00fc taraf\u0131, hareket kabiliyetim k\u00f6t\u00fcle\u015ftik\u00e7e g\u00fcnl\u00fck hayat\u0131m\u0131 ayarlamama neden oldu ve hayat\u0131mdan kesinlikle en iyi \u015fekilde yararlansam ve genel olarak mutlu ve \u00fcretken olsam da, kesinlikle zorluklar\u0131 var ve bu fiziksel ve duygusal olarak yorucu olabiliyor.<\/p>\n<p><strong>D\u00dcNYANIN LGMD HAKKINDA NE BI\u0307LMESI\u0307NI\u0307 I\u0307STI\u0307YORSUNUZ<\/strong>:<\/p>\n<p>Ara\u015ft\u0131rma i\u00e7in daha fazla fona ve bir tedavi veya \u00e7are bulmak i\u00e7in daha fazla bilim insan\u0131na ihtiyac\u0131m\u0131z var.<\/p>\n<p><strong>LGMD HASTALI\u011eINIZ YARIN \"TEDAVI\u0307\" EDI\u0307LEBI\u0307LECEK OLSA, YAPMAK I\u0307STEYECE\u011eI\u0307NI\u0307Z I\u0307LK \u015eEY NE OLURDU?<\/strong>:<\/p>\n<p>Bisikletle (tercihen gidonunda sepeti ve termos kahvesi olan pembe bir Schwinn) sahile gitmek ve ailemle birlikte iskele boyunca y\u00fcr\u00fcmek.<\/p>\n<p>&nbsp;<\/p>\n<p>Daha fazla \"LGMD Spotlight R\u00f6portaj\u0131\" okumak veya gelecek bir r\u00f6portajda yer almak i\u00e7in g\u00f6n\u00fcll\u00fc olmak i\u00e7in l\u00fctfen web sitemizi ziyaret edin: https:\/\/www.lgmd-info.org\/spotlight-interviews<\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSPOTLIGHT INTERVIEW\u201d &nbsp; NAME:\u00a0 Michele \u00a0\u00a0AGE: 52 Yrs. Old [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1340,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[15,16],"class_list":["post-1341","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a","tag-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: Michele - 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\/tr\/individuals-with-lgmd-interviews\/2016\/09\/29\/michele\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Michele - LGMD Awareness Foundation\" \/>\n<meta property=\"og:description\" content=\"LGMD \u201cSPOTLIGHT INTERVIEW\u201d &nbsp; NAME:\u00a0 Michele \u00a0\u00a0AGE: 52 Yrs. 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