{"id":1293,"date":"2016-08-17T12:31:33","date_gmt":"2016-08-17T17:31:33","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1293"},"modified":"2016-08-17T12:31:33","modified_gmt":"2016-08-17T17:31:33","slug":"melanie","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2016\/08\/17\/melanie\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Melanie"},"content":{"rendered":"<p>LGMD \"Spotlight R\u00f6portaj\u0131\"<\/p>\n<div class=\"\" data-offset-key=\"7k8qr-0-0\" data-editor=\"d05bf\" data-block=\"true\">\n<div class=\"_1mf _1mj\" data-offset-key=\"7k8qr-0-0\"><strong>\u0130S\u0130M<\/strong>: Melanie \u00a0 <strong>YA\u015e<\/strong>: 33<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2016\/08\/LGMD2B-Melanie.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1295 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\/08\/LGMD2B-Melanie-300x169.png\" alt=\"LGMD2B - Melanie\" width=\"300\" height=\"169\" \/><\/a><\/div>\n<\/div>\n<div class=\"\" data-offset-key=\"28jt3-0-0\" data-editor=\"d05bf\" data-block=\"true\">\n<div class=\"_1mf _1mj\" data-offset-key=\"28jt3-0-0\"><span data-offset-key=\"28jt3-0-0\"><span data-text=\"true\"><strong>\u00dcLKE:<\/strong> ABD<\/span><\/span><\/div>\n<\/div>\n<div class=\"\" data-offset-key=\"8nhua-0-0\" data-editor=\"d05bf\" data-block=\"true\">\n<div class=\"_1mf _1mj\" data-offset-key=\"8nhua-0-0\"><span data-offset-key=\"8nhua-0-0\"><span data-text=\"true\"><strong>LGMD Alt Tipi<\/strong>: LGMD2b (Disferlinopati\/miyoshi miyopatisi) <\/span><\/span><\/div>\n<\/div>\n<div class=\"\" data-offset-key=\"8ff76-0-0\" data-editor=\"d05bf\" data-block=\"true\">\n<div class=\"_1mf _1mj\" data-offset-key=\"8ff76-0-0\"><strong><span data-offset-key=\"8ff76-0-0\">\u00a0<\/span><\/strong><\/div>\n<\/div>\n<div class=\"\" data-offset-key=\"bij11-0-0\" data-editor=\"d05bf\" data-block=\"true\">\n<div class=\"_1mf _1mj\" data-offset-key=\"bij11-0-0\"><strong>KA\u00c7 YA\u015eINDA TE\u015eHIS KONULDU?<\/strong><\/div>\n<\/div>\n<div class=\"\" data-offset-key=\"dtnao-0-0\" data-editor=\"d05bf\" data-block=\"true\">\n<div class=\"_1mf _1mj\" data-offset-key=\"dtnao-0-0\">Bana 29. do\u011fum g\u00fcn\u00fcmden bir hafta \u00f6nce te\u015fhis konuldu.<\/div>\n<\/div>\n<div class=\"\" data-offset-key=\"8ta8p-0-0\" data-editor=\"d05bf\" data-block=\"true\">\n<div class=\"_1mf _1mj\" data-offset-key=\"8ta8p-0-0\"><span data-offset-key=\"8ta8p-0-0\">\u00a0<\/span><\/div>\n<\/div>\n<div class=\"\" data-offset-key=\"3v5es-0-0\" data-editor=\"d05bf\" data-block=\"true\">\n<div class=\"_1mf _1mj\" data-offset-key=\"3v5es-0-0\"><strong><span data-offset-key=\"3v5es-0-0\"><span data-text=\"true\">\u0130LK BELIRTILERINIZ NEYDI? <\/span><\/span><\/strong><\/div>\n<\/div>\n<div class=\"\" data-offset-key=\"8c71o-0-0\" data-editor=\"d05bf\" data-block=\"true\">\n<div class=\"_1mf _1mj\" data-offset-key=\"8c71o-0-0\">Ayak parmaklar\u0131m\u0131n \u00fczerine kalkam\u0131yordum, \u00e7eki\u00e7 parmaklar\u0131m vard\u0131 (ayak deformitesi) ve s\u00fcrekli a\u011fr\u0131 \u00e7ekiyordum ve halsizdim.<\/div>\n<\/div>\n<div class=\"\" data-offset-key=\"diurv-0-0\" data-editor=\"d05bf\" data-block=\"true\">\n<div class=\"_1mf _1mj\" data-offset-key=\"diurv-0-0\"><span data-offset-key=\"diurv-0-0\">\u00a0<\/span><\/div>\n<\/div>\n<div class=\"\" data-offset-key=\"a2vl8-0-0\" data-editor=\"d05bf\" data-block=\"true\">\n<div class=\"_1mf _1mj\" data-offset-key=\"a2vl8-0-0\"><span data-offset-key=\"a2vl8-0-0\"><span data-text=\"true\"><strong>LGMD HASTASI OLAN BA\u015eKA AILE \u00dcYELERINIZ VAR MI?<\/strong> <\/span><\/span><\/div>\n<\/div>\n<div class=\"\" data-offset-key=\"e1j2g-0-0\" data-editor=\"d05bf\" data-block=\"true\">\n<div class=\"_1mf _1mj\" data-offset-key=\"e1j2g-0-0\">Hay\u0131r, bir tane bile yok!<\/div>\n<\/div>\n<div class=\"\" data-offset-key=\"dfdub-0-0\" data-editor=\"d05bf\" data-block=\"true\">\n<div class=\"_1mf _1mj\" data-offset-key=\"dfdub-0-0\"><span data-offset-key=\"dfdub-0-0\">\u00a0<\/span><\/div>\n<\/div>\n<div class=\"\" data-offset-key=\"95m4q-0-0\" data-editor=\"d05bf\" data-block=\"true\">\n<div class=\"_1mf _1mj\" data-offset-key=\"95m4q-0-0\"><strong><span data-offset-key=\"95m4q-0-0\"><span data-text=\"true\">LGMD I\u0307LE YA\u015eAMANIN EN B\u00dcY\u00dcK ZORLU\u011eU OLARAK NEYI\u0307 G\u00d6R\u00dcYORSUNUZ: <\/span><\/span><\/strong><\/div>\n<\/div>\n<div class=\"\" data-offset-key=\"uok3-0-0\" data-editor=\"d05bf\" data-block=\"true\">\n<div class=\"_1mf _1mj\" data-offset-key=\"uok3-0-0\">G\u00fcnl\u00fck i\u015fleri ve aktiviteleri yapma yetene\u011fini kaybetmek hayat\u0131 olduk\u00e7a zorla\u015ft\u0131rd\u0131. Her k\u00fc\u00e7\u00fck \u015fey i\u00e7in \u00f6nceden plan yapmak zorundas\u0131n\u0131z. \u0130nsanlar\u0131n bu ger\u00e7e\u011fi anlamamas\u0131 da i\u015fleri zorla\u015ft\u0131r\u0131yor. Hasta g\u00f6r\u00fcnmedi\u011finizde, insanlar ihtiya\u00e7lar\u0131n\u0131z\u0131 ciddiye almazlar.<\/div>\n<\/div>\n<div class=\"\" data-offset-key=\"5b4un-0-0\" data-editor=\"d05bf\" data-block=\"true\">\n<div class=\"_1mf _1mj\" data-offset-key=\"5b4un-0-0\"><span data-offset-key=\"5b4un-0-0\">\u00a0<\/span><\/div>\n<\/div>\n<div class=\"\" data-offset-key=\"7jcb7-0-0\" data-editor=\"d05bf\" data-block=\"true\">\n<div class=\"_1mf _1mj\" data-offset-key=\"7jcb7-0-0\"><strong><span data-offset-key=\"7jcb7-0-0\"><span data-text=\"true\">EN B\u00dcY\u00dcK BA\u015eARINIZ NEDIR? <\/span><\/span><\/strong><\/div>\n<\/div>\n<div class=\"\" data-offset-key=\"c16sr-0-0\" data-editor=\"d05bf\" data-block=\"true\">\n<div class=\"_1mf _1mj\" data-offset-key=\"c16sr-0-0\">Y\u00fcksek lisans derecemi ald\u0131m ve Federal H\u00fck\u00fcmet'te harika bir i\u015f buldum (her g\u00fcn hasta olurken).<\/div>\n<\/div>\n<div class=\"\" data-offset-key=\"1tkrv-0-0\" data-editor=\"d05bf\" data-block=\"true\">\n<div class=\"_1mf _1mj\" data-offset-key=\"1tkrv-0-0\"><span data-offset-key=\"1tkrv-0-0\">\u00a0<\/span><\/div>\n<\/div>\n<div class=\"\" data-offset-key=\"2ndr7-0-0\" data-editor=\"d05bf\" data-block=\"true\">\n<div class=\"_1mf _1mj\" data-offset-key=\"2ndr7-0-0\"><strong><span data-offset-key=\"2ndr7-0-0\"><span data-text=\"true\">LGMD BUG\u00dcN OLDU\u011eUNUZ KI\u015eI OLMANIZDA SIZI NASIL ETKILEDI? <\/span><\/span><\/strong><\/div>\n<\/div>\n<div class=\"\" data-offset-key=\"dgc3h-0-0\" data-editor=\"d05bf\" data-block=\"true\">\n<div class=\"_1mf _1mj\" data-offset-key=\"dgc3h-0-0\">Bana ilk te\u015fhis konulduktan sonra kendimi \u00e7aresiz ve yaln\u0131z hissettim. Bu t\u00fcr bir MD'ye sahip ba\u015fka bir ki\u015fi tan\u0131m\u0131yordum ve korkmu\u015ftum. Somurtmak ya da bunun beni \u00fczmesine izin vermek yerine, \"neden d\u0131\u015far\u0131 \u00e7\u0131k\u0131p bu konuda bir \u015feyler yapmayay\u0131m?\" diye d\u00fc\u015f\u00fcnd\u00fcm. B\u00f6ylece MDA'y\u0131 ve nas\u0131l ba\u011f\u0131\u015f toplayabilece\u011fimi ara\u015ft\u0131rmaya ba\u015flad\u0131m. Bir MDA Kas Y\u00fcr\u00fcy\u00fc\u015f\u00fc Tak\u0131m\u0131 kurdum ve o zamandan beri her y\u0131l bir tak\u0131m\u0131m var. Sonra hala yapabiliyorken yapabilece\u011fim her \u015feyi yapmaya karar verdim (\u00e7\u00fcnk\u00fc y\u00fcr\u00fcme yetene\u011fimi kaybediyorum). Ve \u00f6yle de yapt\u0131m. Her yere seyahat ettim ve baz\u0131 yerlere tek ba\u015f\u0131ma gittim. Hatta para\u015f\u00fctle atlamaya bile gittim. Bu te\u015fhisin beni daha da pozitif bir insan yapt\u0131\u011f\u0131na inan\u0131yorum. Beni kesinlikle daha da g\u00fc\u00e7l\u00fc bir insan yapt\u0131. Son 4 y\u0131lda ya\u015fad\u0131\u011f\u0131m deneyimlerin \u00e7o\u011fu, do\u011frudan LGMD'ye kar\u015f\u0131 koymam\u0131n ve olas\u0131l\u0131klar\u0131n yanl\u0131\u015f oldu\u011funu kan\u0131tlamam\u0131n bir sonucudur.<\/div>\n<\/div>\n<div class=\"\" data-offset-key=\"2q5f6-0-0\" data-editor=\"d05bf\" data-block=\"true\">\n<div class=\"_1mf _1mj\" data-offset-key=\"2q5f6-0-0\"><strong><span data-offset-key=\"2q5f6-0-0\">\u00a0<\/span><\/strong><\/div>\n<\/div>\n<div class=\"\" data-offset-key=\"bdlk8-0-0\" data-editor=\"d05bf\" data-block=\"true\">\n<div class=\"_1mf _1mj\" data-offset-key=\"bdlk8-0-0\"><strong><span data-offset-key=\"bdlk8-0-0\"><span data-text=\"true\">D\u00dcNYANIN LGMD HAKKINDA NE BI\u0307LMESI\u0307NI\u0307 I\u0307STI\u0307YORSUNUZ?<\/span><\/span><\/strong><\/div>\n<\/div>\n<div class=\"\" data-offset-key=\"1hvl9-0-0\" data-editor=\"d05bf\" data-block=\"true\">\n<div class=\"_1mf _1mj\" data-offset-key=\"1hvl9-0-0\">Birincisi, bu bizi tan\u0131mlam\u0131yor. Biz neysek oyuz ve sadece bu korkun\u00e7 hastal\u0131\u011fa sahibiz. \u0130kincisi, iyi g\u00f6r\u00fcnmemiz iyi hissetti\u011fimiz anlam\u0131na gelmez. \u00dc\u00e7\u00fcnc\u00fcs\u00fc, musk\u00fcler distrofi MS de\u011fildir.<\/div>\n<\/div>\n<div class=\"\" data-offset-key=\"2dch6-0-0\" data-editor=\"d05bf\" data-block=\"true\">\n<div class=\"_1mf _1mj\" data-offset-key=\"2dch6-0-0\"><span data-offset-key=\"2dch6-0-0\">\u00a0<\/span><\/div>\n<\/div>\n<div class=\"\" data-offset-key=\"7e93d-0-0\" data-editor=\"d05bf\" data-block=\"true\">\n<div class=\"_1mf _1mj\" data-offset-key=\"7e93d-0-0\"><strong><span data-offset-key=\"7e93d-0-0\"><span data-text=\"true\">LGMD HASTALI\u011eINIZ YARIN \"TEDAVI\u0307\" EDI\u0307LEBI\u0307LECEK OLSA, YAPACA\u011eINIZ I\u0307LK \u015eEY NE OLURDU?<\/span><\/span><\/strong><\/div>\n<\/div>\n<div class=\"\" data-offset-key=\"dgqn0-0-0\" data-editor=\"d05bf\" data-block=\"true\">\n<div class=\"_1mf _1mj\" data-offset-key=\"dgqn0-0-0\">Eskiden yapt\u0131\u011f\u0131m gibi dans edin! Sonra t\u00fcm Ulusal Parklarda y\u00fcr\u00fcy\u00fc\u015f yapmak ve bir s\u00fcr\u00fc harika foto\u011fraf \u00e7ekmek. Sonra bir maraton ko\u015fun ya da engelli bir yar\u0131\u015f yap\u0131n.<\/div>\n<\/div>\n<div class=\"\" data-offset-key=\"ft9dg-0-0\" data-editor=\"d05bf\" data-block=\"true\">\n<div class=\"_1mf _1mj\" data-offset-key=\"ft9dg-0-0\"><span data-offset-key=\"ft9dg-0-0\">\u00a0<\/span><\/div>\n<\/div>\n<div class=\"\" data-offset-key=\"6jcph-0-0\" data-editor=\"d05bf\" data-block=\"true\">\n<div class=\"_1mf _1mj\" data-offset-key=\"6jcph-0-0\"><span data-offset-key=\"6jcph-0-0\">\u00a0<\/span><\/div>\n<\/div>\n<div class=\"\" data-offset-key=\"7usv6-0-0\" data-editor=\"d05bf\" data-block=\"true\">\n<div class=\"_1mf _1mj\" data-offset-key=\"7usv6-0-0\"><span data-offset-key=\"7usv6-0-0\"><span data-text=\"true\">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 <\/span><\/span><\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSpotlight Interview\u201d NAME: Melanie \u00a0 AGE: 33 COUNTRY: USA [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1295,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[21,23,55,16],"class_list":["post-1293","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-dysferlinopathy","tag-lgmd2b","tag-miyoshi-myopathy","tag-united-states"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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