{"id":8617,"date":"2024-10-27T18:33:33","date_gmt":"2024-10-27T18:33:33","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=8617"},"modified":"2024-10-27T18:33:33","modified_gmt":"2024-10-27T18:33:33","slug":"individual-with-lgmd-nancy","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2024\/10\/27\/individual-with-lgmd-nancy\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Nancy"},"content":{"rendered":"<p><img decoding=\"async\" class=\"lazyload aligncenter wp-image-8618 size-medium\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/10\/LGMD2C-Nancy-P-300x169.png\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/10\/LGMD2C-Nancy-P-300x169.png\" alt=\" \" width=\"300\" height=\"169\" srcset=\"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-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/10\/LGMD2C-Nancy-P-200x113.png 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/10\/LGMD2C-Nancy-P-300x169.png 300w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/10\/LGMD2C-Nancy-P-400x225.png 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/10\/LGMD2C-Nancy-P-600x338.png 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/10\/LGMD2C-Nancy-P-768x432.png 768w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/10\/LGMD2C-Nancy-P-800x450.png 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/10\/LGMD2C-Nancy-P-1024x576.png 1024w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/10\/LGMD2C-Nancy-P-1200x675.png 1200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/10\/LGMD2C-Nancy-P.png 1280w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 300px) 100vw, 300px\" \/><\/p>\n<p><strong>\u0130sim<\/strong>:  Nancy<\/p>\n<p><strong>Ya\u015f<\/strong>: 76<\/p>\n<p><strong>\u00dclke<\/strong>: ABD<\/p>\n<p><strong>LGMD Alt Tipi<\/strong>: LGMD 2C\/R5 Gama Sarkoglikan ile ili\u015fkili<\/p>\n<p>&nbsp;<\/p>\n<p><strong>Ka\u00e7 ya\u015f\u0131nda te\u015fhis konuldu?<\/strong>?<\/p>\n<p>Bana 25 ya\u015f\u0131nda polimiyozit te\u015fhisi kondu ve 27 y\u0131l boyunca Prednisone ile tedavi edildim.  \u0130lk do\u011fru te\u015fhisim ellili ya\u015flar\u0131mdayd\u0131.<\/p>\n<p><strong>\u0130lk belirtileriniz neydi? <\/strong><\/p>\n<p>Anaokulundayken bir tarlada ko\u015ftu\u011fumu ve sonuncu oldu\u011fumu hat\u0131rl\u0131yorum. Ama \u00fcniversitede iki katl\u0131 bir eve ta\u015f\u0131nana kadar pek sorun ya\u015famad\u0131m. Merdivenleri t\u0131rmanmak ve yerden kalkmak \u00e7ok zorla\u015ft\u0131.<\/p>\n<p><strong>LGMD hastas\u0131 olan ba\u015fka aile \u00fcyeleriniz var m\u0131?\u00a0 <\/strong><\/p>\n<p>Hay\u0131r, yok.<\/p>\n<p><strong>LGMD ile ya\u015faman\u0131n en b\u00fcy\u00fck zorluklar\u0131n\u0131n ne oldu\u011funu d\u00fc\u015f\u00fcn\u00fcyorsunuz?<\/strong>?<\/p>\n<p>Sorunlar\u0131m \u00e7ok yava\u015f ilerliyordu.  Okul s\u0131ras\u0131nda, hatta \u00fcniversite boyunca \u00e7ok az zorluk ya\u015fad\u0131m.  \u00d6\u011fretmenlik kariyerime ba\u015flad\u0131\u011f\u0131mda, oturur pozisyondan kalkmakta zorland\u0131m ve daha sonra kald\u0131r\u0131mlara \u00e7\u0131kmakta zorland\u0131m.  Araba kullanmak i\u00e7in bacaklar\u0131m\u0131 kald\u0131rmak zorla\u015ft\u0131 ve yorgunluk bir sorun haline geldi, ancak \u00f6\u011fretmenli\u011fe devam ettim.  Her zaman \u00e7ok sevgi dolu, \u015fefkatli bir e\u015f, harika \u00e7ocuklar, harika bir aile, arkada\u015flar ve i\u015f arkada\u015flar\u0131 taraf\u0131ndan desteklendim, bu da durumumu kabullenmemi m\u00fcmk\u00fcn k\u0131ld\u0131.  \u00d6nce baston, y\u00fcr\u00fcte\u00e7, sonra da ak\u00fcl\u00fc tekerlekli sandalye kulland\u0131m.  Zorluklar vard\u0131 ama hi\u00e7bir zaman bunald\u0131\u011f\u0131m\u0131 hissetmedim. Ayr\u0131ca, LGMD'nin yava\u015f ilerlemesi yeni zorluklara uyum sa\u011flamam\u0131 m\u00fcmk\u00fcn k\u0131ld\u0131.  Art\u0131k gidebilece\u011fim yerler s\u0131n\u0131rl\u0131.  Seyahat etmek her zaman bir macerad\u0131r.  Birka\u00e7 y\u00fck asans\u00f6r\u00fcne bindim ve birka\u00e7 tuvalette mahsur kald\u0131m ama en az\u0131ndan art\u0131k bunlara g\u00fclebiliyorum.<\/p>\n<p><strong>En b\u00fcy\u00fck ba\u015far\u0131n\u0131z nedir?\u00a0 <\/strong><\/p>\n<p>Sadece iyi bir tutum sergilemeyi s\u00f6yleyebilirim. Evlenebildim, k\u0131z\/erkek ikizlerim oldu ve hayat\u0131mdaki de\u011fi\u015fikliklere uyum sa\u011flarken olduk\u00e7a normal bir hayat ya\u015fayabildim.<\/p>\n<p><strong>LGMD bug\u00fcn oldu\u011funuz ki\u015fi olman\u0131zda sizi nas\u0131l etkiledi?\u00a0 <\/strong><\/p>\n<p>Bu bana pozitif olmay\u0131 ve her \u015feyin en iyi \u015fekilde sonu\u00e7lanaca\u011f\u0131na inanmay\u0131 \u00f6\u011fretti.  Hayat\u0131n\u0131zda sizi seven ve destekleyen insanlar\u0131n olmas\u0131 her zaman yard\u0131mc\u0131 olur.<\/p>\n<p><strong>D\u00fcnyan\u0131n LGMD hakk\u0131nda ne bilmesini istersiniz?<\/strong>?<\/p>\n<p>Evet, yol almak zordur ve baz\u0131 g\u00fcnler kesinlikle di\u011ferlerinden daha zordur, ancak etraf\u0131n\u0131z pozitif kalan ve sizi cesaretlendiren insanlarla \u00e7evriliyse, d\u00fc\u015f\u00fcnd\u00fc\u011f\u00fcn\u00fczden daha fazla \u015fey ba\u015far\u0131labilir.<\/p>\n<p><strong>LGMD hastal\u0131\u011f\u0131n\u0131z yar\u0131n \"tedavi edilebilseydi\", yapmak isteyece\u011finiz ilk \u015fey ne olurdu?<\/strong>?<\/p>\n<p>Bana bakt\u0131\u011f\u0131 onca y\u0131l kar\u015f\u0131l\u0131\u011f\u0131nda kocama yard\u0131m etmek istiyorum.   Aileme ve arkada\u015flar\u0131ma ger\u00e7ek bir sar\u0131lma verebilmek isterdim.  Ve sadece e\u011flenmek i\u00e7in dans etmek isterdim.<\/p>","protected":false},"excerpt":{"rendered":"<p>Name:\u00a0 Nancy Age: 76 Country: USA LGMD Sub-Type: LGMD 2C\/R5 [&hellip;]<\/p>","protected":false},"author":3,"featured_media":8618,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,75],"tags":[125],"class_list":["post-8617","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2c","tag-lgmd2c-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: Nancy - 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=\"http:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2024\/10\/27\/individual-with-lgmd-nancy\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Nancy - 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