{"id":1651,"date":"2018-01-08T10:22:50","date_gmt":"2018-01-08T16:22:50","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1651"},"modified":"2018-01-08T10:22:50","modified_gmt":"2018-01-08T16:22:50","slug":"jill-2","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2018\/01\/08\/jill-2\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Jill"},"content":{"rendered":"<p><span style=\"color: #000000;\"><strong>LGMD Spotlight R\u00f6portaj\u0131<\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>\u0130sim<\/strong><\/span>:<span style=\"color: #000000;\">\u00a0 \u00a0 Jill\u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0\u00a0<strong>Ya\u015f<\/strong>: 33 ya\u015f\u0131nda<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2018\/01\/LGMD2i-Jill-W.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1650 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\/2018\/01\/LGMD2i-Jill-W-300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>\u00dclke<\/strong>:    Birle\u015fik Devletler<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>LGMD Alt Tipi<\/strong>:    LGMD2i<\/span><!--more--><\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"color: #000000;\"><strong>Ka\u00e7 ya\u015f\u0131nda te\u015fhis konuldu?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">Bana 27 ya\u015f\u0131nda te\u015fhis konuldu.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>\u0130lk belirtileriniz neydi?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">\u0130lkokulda her zaman biti\u015f \u00e7izgisini en son ge\u00e7en \u00e7ocuk ben olurdum. <\/span>spor salonu<span style=\"color: #000000;\">. A\u011fr\u0131l\u0131 bacak kramplar\u0131 nedeniyle okul aktivitelerine kat\u0131lamad\u0131\u011f\u0131m\u0131 da hat\u0131rl\u0131yorum. Ancak, dans tak\u0131m\u0131ndayd\u0131m ve <\/span>s\u00fcper normal<span style=\"color: #000000;\"> \u00c7ocuklu\u011fum. \u0130lk \u00e7ocu\u011fumun do\u011fumundan sonra, 2008'de, 23 ya\u015f\u0131ndayken, yorgunluk ve a\u011fr\u0131 ile ara ara acil servise ba\u015fvurmaya ba\u015flad\u0131m. Kocama \"Bende bir sorun var ve bir g\u00fcn bunun ne oldu\u011funu bulaca\u011f\u0131m\" dedi\u011fimi hat\u0131rl\u0131yorum. 2010'da ikinci k\u0131z\u0131m\u0131n do\u011fumundan sonra, y\u00fcr\u00fcmeye ba\u015flayan bir \u00e7ocu\u011fa ve yeni do\u011fmu\u015f bir bebe\u011fe sahip olman\u0131n fizikselli\u011fi ile m\u00fccadele ettim. Art\u0131k b\u00fcy\u00fck bir \u00e7aba sarf etmeden bir kat merdiveni \u00e7\u0131kam\u0131yordum. H\u00e2l\u00e2 \"belki de yorgun anneler b\u00f6yle hissediyordur\" diye d\u00fc\u015f\u00fcn\u00fcyordum. Sonra 2011'de bir vir\u00fcs kap\u0131p ate\u015fimi y\u00fckselttikten sonra rabdomiyolize girdim. \u015eiddetli halsizlikle doktora gittim ve CPK de\u011ferim 11.000'di. Bu bizi nihayet do\u011fru yola g\u00f6t\u00fcrd\u00fc ve LGMD2I te\u015fhisi ortaya \u00e7\u0131kt\u0131. Bir\u00e7o\u011funuz gibi, tan\u0131ya giden uzun bir yoldu.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>LGMD hastas\u0131 olan ba\u015fka aile \u00fcyeleriniz var m\u0131?<\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\">Hay\u0131r, ben homozigot resesifim, yani ebeveynlerimin her ikisi de ta\u015f\u0131y\u0131c\u0131yd\u0131. Neyse ki erkek ve k\u0131z karde\u015flerim etkilenmedi.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>LGMD ile ya\u015faman\u0131n en b\u00fcy\u00fck zorluklar\u0131n\u0131n ne oldu\u011funu d\u00fc\u015f\u00fcn\u00fcyorsunuz?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">Bana te\u015fhis konuldu\u011funda k\u0131zlar\u0131m bebekti. Bir y\u0131l sonra kocama beyin kanseri te\u015fhisi kondu. Aileme bakamayaca\u011f\u0131mdan korkuyordum. Bize ne olaca\u011f\u0131 konusunda endi\u015felenerek saatler ge\u00e7irdim. Anda kalmaya ve iyi zamanlar\u0131n tad\u0131n\u0131 \u00e7\u0131karmaya \u00e7al\u0131\u015f\u0131yorum. \"Akl\u0131m\u0131 oyunda\" tutmak ve d\u00fc\u015f\u00fc\u015f\u00fcm\u00fc beklememek ya da hayal k\u0131r\u0131kl\u0131\u011f\u0131 ve ac\u0131n\u0131n beni etkilemesine izin vermemek zor olabilir <\/span>i\u00e7in<span style=\"color: #000000;\"> Yatakta. Ancak, bug\u00fcn buraday\u0131m. Kocam bug\u00fcn burada. \u00c7ocuklar\u0131m inan\u0131lmaz ve diren\u00e7li. Bu y\u00fczden minnettar\u0131m ve devam ediyoruz.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>En b\u00fcy\u00fck ba\u015far\u0131n\u0131z nedir?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">Benim en b\u00fcy\u00fck ki\u015fisel ba\u015far\u0131m mutlulu\u011fumdur. Ya\u015fad\u0131\u011f\u0131m\u0131z zorluklara ra\u011fmen mutlu olmak i\u00e7in ger\u00e7ekten \u00e7ok \u00e7al\u0131\u015ft\u0131m. Bununla ger\u00e7ekten gurur duyuyorum.  Bu, her g\u00fcn yapmaya \u00e7al\u0131\u015ft\u0131\u011f\u0131m bir se\u00e7im.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>LGMD bug\u00fcn oldu\u011funuz ki\u015fi olman\u0131zda sizi nas\u0131l etkiledi?<\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\">Te\u015fhisten sonra daha anlaml\u0131 bir hayat ya\u015fad\u0131\u011f\u0131m\u0131 hissediyorum. \u0130nsanlar\u0131m\u0131 daha yo\u011fun seviyorum. Yava\u015flamay\u0131 \u00f6\u011frendim, \u00e7\u00fcnk\u00fc bunu yapmak zorunday\u0131m ve bu hayat\u0131 ya\u015famak i\u00e7in k\u00f6t\u00fc bir yol de\u011fil. Ayr\u0131ca kronik hastal\u0131\u011f\u0131, a\u011fr\u0131s\u0131, kederi... tembellik veya \u00e7aba eksikli\u011fi olarak kolayca yanl\u0131\u015f yorumlanabilen t\u00fcm bu g\u00f6r\u00fcnmez hastal\u0131klar\u0131 olanlar\u0131 anlama ve onlarla empati kurma f\u0131rsat\u0131 buldu\u011fum i\u00e7in de minnettar\u0131m. Sizi anl\u0131yorum ve zor oldu\u011fu i\u00e7in \u00fczg\u00fcn\u00fcm.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>D\u00fcnyan\u0131n LGMD hakk\u0131nda ne bilmesini istersiniz?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">D\u00fcnyan\u0131n LGMD'nin genetik ge\u00e7i\u015fli bir hastal\u0131k oldu\u011funu ve \"beslenme yetersizli\u011fi\" ya da spor salonuna gitmemenin bir sonucu olmad\u0131\u011f\u0131n\u0131 bilmesini istiyorum. Bu, insanlar\u0131n se\u00e7ti\u011fi bir hastal\u0131k de\u011fil. \u0130lerleyici bir hastal\u0131kt\u0131r ve tedavisi yoktur. Pozitif kalmak ve aktif olmak yard\u0131mc\u0131 olsa da ilerlemeyi durdurmayacakt\u0131r. Bana g\u00f6re, LGMD'li birine s\u00f6ylenebilecek en iyi \u015fey, \"Zor oldu\u011funu biliyorum ama sen \u00e7ok iyi bir i\u015f \u00e7\u0131kar\u0131yorsun\" demektir. Gelecekte bir tedavi veya \u00e7are bulmak \u00e7ok harika olurdu. Umutlu olmak iyidir.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>LGMD hastal\u0131\u011f\u0131n\u0131z yar\u0131n \"tedavi edilebilseydi\", yapmak isteyece\u011finiz ilk \u015fey ne olurdu?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">K\u0131zlar\u0131m\u0131 s\u0131rtlay\u0131p okula g\u00f6t\u00fcrmek, b\u00fcy\u00fck bir parti vermek ve en sevdi\u011fimiz g\u00f6l\u00fcn etraf\u0131nda ailece bisiklete binmek.<\/span><\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"color: #000000;\">* 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 <\/span>at <span style=\"color: #000000;\"><a style=\"color: #000000;\" href=\"https:\/\/www.lgmd-info.org\/tr\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a>\u00a0<\/span><\/p>\n<p><span style=\"color: #000000;\">* * * LGMD konusunda fark\u0131ndal\u0131k yaratmaya yard\u0131mc\u0131 olmak i\u00e7in l\u00fctfen bu g\u00f6nderiyi BE\u011eEN\u0130N, YORUM YAPIN ve PAYLA\u015eIN!<\/span><\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD Spotlight Interview Name:\u00a0 \u00a0 Jill\u00a0 \u00a0 \u00a0 \u00a0 \u00a0 [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1650,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,35],"tags":[83],"class_list":["post-1651","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2i","tag-lgmd2i-united-states"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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