{"id":3778,"date":"2021-01-03T13:42:06","date_gmt":"2021-01-03T19:42:06","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3778"},"modified":"2024-02-09T14:24:24","modified_gmt":"2024-02-09T14:24:24","slug":"individual-with-lgmd-lisa","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2021\/01\/03\/individual-with-lgmd-lisa\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Lisa"},"content":{"rendered":"<div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-1 fusion-flex-container nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-content-wrap\" style=\"max-width:1456px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-0 fusion_builder_column_1_1 1_1 fusion-flex-column\" style=\"--awb-bg-size:cover;--awb-width-large:100%;--awb-margin-top-large:0px;--awb-spacing-right-large:1.92%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:1.92%;--awb-width-medium:100%;--awb-spacing-right-medium:1.92%;--awb-spacing-left-medium:1.92%;--awb-width-small:100%;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\"><div class=\"fusion-column-wrapper fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-text fusion-text-1\"><p><a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/01\/Unknown-Lisa-T-1.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-3780 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\/2021\/01\/Unknown-Lisa-T-1-300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>LGMD \"Spotlight R\u00f6portaj\u0131\"<\/strong><\/p>\n<p><strong>ADI:<\/strong>\u00a0 Lisa\u00a0\u00a0\u00a0\u00a0 <strong>YA\u015e:<\/strong> 50<\/p>\n<p><strong>\u00dcLKE:<\/strong> \u00a0 Amerika Birle\u015fik Devletleri<\/p>\n<p><strong>LGMD ALT T\u0130P\u0130<\/strong>:   B\u0130L\u0130NM\u0130YOR<\/p>\n<p><strong>KA\u00c7 YA\u015eINDA TE\u015eHIS KONULDU?<\/strong><\/p>\n<p>Onlarca y\u0131l yanl\u0131\u015f te\u015fhis konulduktan sonra 45 ya\u015f\u0131ndayken LGMD te\u015fhisi konuldu<\/p>\n<p><strong>\u0130LK BELIRTILERINIZ NEYDI?<\/strong><\/p>\n<p>\u0130lk belirtilerim kaslar\u0131m\u0131n sertle\u015fmesi ve uyu\u015fmas\u0131yd\u0131. Ama ben bir sporcuydum, bu y\u00fczden normal g\u00fc\u00e7 testi zay\u0131fl\u0131k g\u00f6stermedi. Nefes almak ve kardiyo da her zaman bir m\u00fccadeleydi<\/p>\n<p><strong>LGMD HASTASI OLAN BA\u015eKA AILE \u00dcYELERINIZ VAR MI?<\/strong><\/p>\n<p>K\u0131z karde\u015fim ve ye\u011fenimde de ayn\u0131 mutasyon var ancak \u015fu ana kadar son derece hafif semptomlar g\u00f6r\u00fcl\u00fcyor (daha gen\u00e7).  \u00c7ocuklar \u015fimdi test ediliyor<\/p>\n<p><strong>LGMD I\u0307LE YA\u015eARKEN KAR\u015eILA\u015eTI\u011eINIZ EN B\u00dcY\u00dcK ZORLUKLARIN NELER OLDU\u011eUNU D\u00dc\u015e\u00dcN\u00dcYORSUNUZ:<\/strong><\/p>\n<p>En b\u00fcy\u00fck zorluklar basit \u015feylerdir. Bir kald\u0131r\u0131ma \u00e7\u0131kmak ya da yiyecekleri ve torunlar\u0131 kald\u0131rmak.  Sandalyeden kalkmak, \u00f6zellikle restoranlarda vs. Bunlar k\u00fc\u00e7\u00fck g\u00f6r\u00fcn\u00fcyor ama beni her g\u00fcn etkiliyor<\/p>\n<p><strong>EN B\u00dcY\u00dcK BA\u015eARINIZ NEDIR?<\/strong><\/p>\n<p>En b\u00fcy\u00fck ba\u015far\u0131m her zaman \u00e7ocuklar\u0131m olacak. En k\u00fc\u00e7\u00fc\u011f\u00fcm 12 ya\u015f\u0131nda. En b\u00fcy\u00fck korkum, di\u011fer \u00e7ocuklar\u0131m\u0131n yan\u0131nda oldu\u011fum gibi onun da yan\u0131nda olamamak.<\/p>\n<p><strong>LGMD BUG\u00dcN OLDU\u011eUNUZ KI\u015eI OLMANIZDA SIZI NASIL ETKILEDI?<\/strong><\/p>\n<p>Zor bir soru. Beni de\u011fi\u015ftirmesine izin vermemeye \u00e7al\u0131\u015f\u0131yorum ama yine de de\u011fi\u015ftiriyor.  \u0130nsanlar\u0131n kar\u015f\u0131la\u015ft\u0131\u011f\u0131 zorluklar\u0131n kesinlikle daha fazla fark\u0131nday\u0131m. Sadece kendiminkilerin de\u011fil, sadece fiziksel olarak da de\u011fil.  Ba\u015fkalar\u0131na ba\u011f\u0131ml\u0131 olmay\u0131 seven bir insan de\u011filim.  Cesaretim k\u0131r\u0131lmadan yard\u0131m\u0131 nas\u0131l kabul edece\u011fimi yava\u015f yava\u015f \u00f6\u011freniyorum.<\/p>\n<p><strong>D\u00dcNYANIN LGMD HAKKINDA NE BI\u0307LMESI\u0307NI\u0307 I\u0307STI\u0307YORSUNUZ?<\/strong><\/p>\n<p>H\u00e2l\u00e2 var oldu\u011funu.  Bir\u00e7ok \u015fekilde ortaya \u00e7\u0131k\u0131yor ve hala bir tedavisi yok.  Her g\u00fcn dua ediyorum ki gen terapisi h\u0131zla ilerlesin.<\/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>LGMD hastal\u0131\u011f\u0131m yar\u0131n tedavi edilse \u00e7ocuklar\u0131m\u0131 \u0130rlanda'ya g\u00f6t\u00fcr\u00fcrd\u00fcm (\u0130rlandal\u0131y\u0131m).   Sonra da sevdi\u011fim ve art\u0131k yapamad\u0131\u011f\u0131m ev \u00e7evirme i\u015fine geri d\u00f6nerdim.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":3835,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13],"tags":[],"class_list":["post-3778","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews"],"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: Lisa - 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\" 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