{"id":1059,"date":"2015-11-30T11:36:31","date_gmt":"2015-11-30T17:36:31","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1059"},"modified":"2015-11-30T11:36:31","modified_gmt":"2015-11-30T17:36:31","slug":"molly","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2015\/11\/30\/molly\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Molly"},"content":{"rendered":"<p>11\/30\/2015<\/p>\n<p><strong>\u0130S\u0130M<\/strong>:  Molly\u00a0\u00a0 <strong>\u00a0YA\u015e<\/strong>: 29 ya\u015f\u0131nda<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2015\/11\/LGMD2B-Molly.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1060 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\/2015\/11\/LGMD2B-Molly-300x169.png\" alt=\"LGMD2B - Molly\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>\u00dcLKE:<\/strong>\u00a0 Birle\u015fik Devletler<\/p>\n<p><strong>LGMD Alt Tipi<\/strong>:   LGMD2B: disferlinopati\/Miyoshi Miyopatisi<\/p>\n<p>&nbsp;<\/p>\n<p><strong>Ka\u00e7 ya\u015f\u0131nda te\u015fhis konuldu?<\/strong>:<\/p>\n<p>Belirtiler g\u00f6stermeye 17 ya\u015f\u0131ndayken ba\u015flad\u0131m ve o zaman bana Guillain-Barre hastas\u0131 oldu\u011fum s\u00f6ylendi. 19 ya\u015f\u0131ma geldi\u011fimde ilk belirtilerim geri d\u00f6nd\u00fc ve k\u00f6t\u00fcle\u015fti, ancak bu kez bana polimiyozit te\u015fhisi kondu.  Hastaneye girip \u00e7\u0131kt\u0131\u011f\u0131m 3 y\u0131l\u0131n ard\u0131ndan nihayet 22 ya\u015f\u0131ndayken DNA testi ile Miyoshi Miyopatisi te\u015fhisi konuldu.<\/p>\n<p><strong>\u0130lk belirtileriniz neydi?<\/strong>:<\/p>\n<p>\u0130lk belirtilerim merdiven \u00e7\u0131kmakta ve sandalyeden kalkmakta zorlanmamd\u0131. Yakla\u015f\u0131k 15 ya\u015f\u0131ndayken atletik aktivitemde \u00f6nemli bir azalma oldu\u011funu fark ettim ancak bunu ergenlik tembelli\u011fine ba\u011flad\u0131m. Lisede \u00fc\u00e7\u00fcnc\u00fc s\u0131n\u0131fa ge\u00e7ip beden e\u011fitimi dersimi tamamlayamay\u0131ncaya ve s\u0131k s\u0131k d\u00fc\u015fmeye ba\u015flay\u0131ncaya kadar bir sorun oldu\u011funu anlamam\u0131\u015ft\u0131m.<\/p>\n<p><strong>LGMD hastas\u0131 olan ba\u015fka aile \u00fcyeleriniz var m\u0131?<\/strong><\/p>\n<p>LGMD'den etkilenen ba\u015fka aile \u00fcyem 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>En b\u00fcy\u00fck zorluklardan baz\u0131lar\u0131 arkada\u015flar\u0131m\u0131n ve ailemin ko\u015fu, y\u00fcr\u00fcy\u00fc\u015f, g\u00fcnl\u00fck egzersiz ve hatta dans gibi fiziksel aktivitelere kat\u0131lmalar\u0131n\u0131 izlemek. Onlara kat\u0131lamad\u0131\u011f\u0131m i\u00e7in \u00fcz\u00fcl\u00fcyorum ve bazen kaliteli zaman\u0131 ka\u00e7\u0131r\u0131yormu\u015fum gibi hissediyorum. Belki de daha zor olan bir ba\u015fka m\u00fccadele de g\u00fcnl\u00fck m\u00fccadeledir; her sabah haz\u0131rlanmak ve odan\u0131z\u0131 toplamak, evinizi temizlemek, \u00e7ama\u015f\u0131r y\u0131kamak gibi bir\u00e7ok ki\u015finin hafife ald\u0131\u011f\u0131 g\u00fcnl\u00fck g\u00f6revleri yerine getirmek \u00e7ok daha fazla \u00e7aba gerektirir. Gururumu bir kenara b\u0131rak\u0131p arkada\u015flar\u0131ma ve aileme daha fazla g\u00fcvenmeyi \u00f6\u011frenmek zorunda kald\u0131m ki bu da ba\u015fl\u0131 ba\u015f\u0131na bir zorluk.<\/p>\n<p><strong>En b\u00fcy\u00fck ba\u015far\u0131n\u0131z nedir?<\/strong>:<\/p>\n<p>San\u0131r\u0131m bug\u00fcne kadarki en b\u00fcy\u00fck ba\u015far\u0131m, \u00fcniversite y\u0131llar\u0131m boyunca hastaneye girip \u00e7\u0131kmama ra\u011fmen \u00e7al\u0131\u015fmaya devam etmem ve sonunda bir diploma almam oldu. \u015eimdi bu diplomay\u0131 her g\u00fcn \u00f6\u011fretmen olarak kullan\u0131yorum. \u00d6\u011fretmenlik her zaman hayalimdi ve bunu ba\u015fard\u0131m. \u00d6\u011frencilerim ve meslekta\u015flar\u0131m beni \u00e7ok destekliyor ve her g\u00fcn buna de\u011fiyor.<\/p>\n<p><strong>LGMD bug\u00fcn oldu\u011funuz ki\u015fi olman\u0131zda sizi nas\u0131l etkiledi?<\/strong><\/p>\n<p>LGMD beni daha ama\u00e7l\u0131 bir insan haline getirdi. Hem kendi hayat\u0131ma hem de etraf\u0131mdakilere kar\u015f\u0131 daha ama\u00e7l\u0131 olmam\u0131 sa\u011flad\u0131. G\u00fcnl\u00fck hayat\u0131n\u0131z\u0131 etkileyen bir rahats\u0131zl\u0131kla ya\u015fad\u0131\u011f\u0131n\u0131zda, etraf\u0131n\u0131z\u0131 anlam ifade eden ve hayat\u0131n\u0131z\u0131 tatmin eden insanlarla ve faaliyetlerle \u00e7evrelemeniz ve \u00f6nemsiz ve as\u0131ls\u0131z \u015feylerle zaman kaybetmemeniz \u00f6nemlidir.   Her g\u00fcn ya\u015fad\u0131klar\u0131m olmasayd\u0131 bunu bu kadar erken fark eder miydim emin de\u011filim.<\/p>\n<p><strong>D\u00fcnyan\u0131n LGMD hakk\u0131nda ne bilmesini istersiniz?<\/strong>:<\/p>\n<p>\u00d6ncelikle herkesin bende garip bir MS t\u00fcr\u00fc oldu\u011funu d\u00fc\u015f\u00fcnmeyi b\u0131rakmas\u0131n\u0131 istiyorum. Ayr\u0131ca herkesin, topluluk olarak de\u011ferli oldu\u011fumuzu ve sunacak \u00e7ok \u015feyimiz oldu\u011funu bilmesini istiyorum. Bedenlerimiz bizimle i\u015fbirli\u011fi yapm\u0131yor olabilir ama biz \u00e7ok zeki ve tutkulu bir toplulu\u011fuz. Ayr\u0131ca, d\u00fcnyan\u0131n LGMD'nin var oldu\u011funu bilmesini istiyorum, ancak bu alanda b\u00fcy\u00fck ad\u0131mlar att\u0131\u011f\u0131m\u0131z\u0131 d\u00fc\u015f\u00fcn\u00fcyorum.<\/p>\n<p>&nbsp;<\/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>Yapmak istedi\u011fim \u00e7ok \u015fey var ve a\u00e7\u0131k\u00e7as\u0131 bunlar\u0131n \u00e7o\u011fu sahip olmad\u0131\u011f\u0131m fiziksel yeteneklerle ilgili. Appalachian Trail'de y\u00fcr\u00fcy\u00fc\u015f yapmay\u0131 ya da uzun s\u00fcre d\u0131\u015far\u0131da kalmay\u0131 gerektiren herhangi bir \u015feyi \u00e7ok isterdim. Ayr\u0131ca tekrar atlamay\u0131 da \u00e7ok isterdim, bunun \u00f6zg\u00fcrle\u015ftirici bir yan\u0131 var.<\/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>11\/30\/2015 NAME:\u00a0 Molly\u00a0\u00a0 \u00a0AGE: 29 years old COUNTRY:\u00a0 United States [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1060,"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-1059","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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