{"id":1633,"date":"2017-11-06T10:00:14","date_gmt":"2017-11-06T16:00:14","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1633"},"modified":"2017-11-06T10:00:14","modified_gmt":"2017-11-06T16:00:14","slug":"fred","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2017\/11\/06\/fred\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Fred"},"content":{"rendered":"

LGMD \"SPOT I\u015eI\u011eI R\u00d6PORTAJI\"<\/strong><\/p>\n

\u0130sim<\/strong>: Fred \u00a0\u00a0Ya\u015f<\/strong>: 36 ya\u015f\u0131nda\"\"<\/a><\/p>\n

\u00dclke<\/strong>: Birle\u015fik Devletler<\/p>\n

LGMD Alt Tipi<\/strong>: LGMD2A \/ Kalpainopati<\/p>\n

 <\/p>\n

Ka\u00e7 ya\u015f\u0131nda te\u015fhis konuldu?<\/strong>:<\/p>\n

Bana 13 ya\u015f\u0131mda te\u015fhis konuldu.<\/p>\n

\u0130lk belirtileriniz neydi?<\/strong>:<\/p>\n

Geriye d\u00f6n\u00fcp bakt\u0131\u011f\u0131mda her zaman di\u011fer \u00e7ocuklardan biraz daha yava\u015ft\u0131m ama ailemin ya da benim fark etti\u011fimiz bir belirti oldu\u011funu s\u00f6yleyemem. \u015eans eseri te\u015fhis konuldu. Bir kilise grubuyla kayak yapmaya gitmi\u015ftim ve sonunda baca\u011f\u0131m\u0131 k\u0131rd\u0131m. K\u0131r\u0131k baca\u011f\u0131m i\u00e7in hastanenin acil servisine gitti\u011fimde, bir doktor o ya\u015fta olmam gerekti\u011fi kadar g\u00fc\u00e7l\u00fc olmad\u0131\u011f\u0131m\u0131 fark etti. Bunun \u00fczerine kas biyopsisi yap\u0131ld\u0131. Ba\u015flang\u0131\u00e7ta bana Becker's MD te\u015fhisi kondu, bunlar\u0131n hepsi DNA testinden \u00f6nceydi.<\/p>\n

LGMD hastas\u0131 olan ba\u015fka aile \u00fcyeleriniz var m\u0131? <\/strong><\/p>\n

Hay\u0131r, bir tek ben var\u0131m.<\/p>\n

LGMD ile ya\u015faman\u0131n en b\u00fcy\u00fck zorluklar\u0131n\u0131n ne oldu\u011funu d\u00fc\u015f\u00fcn\u00fcyorsunuz?<\/strong>:<\/p>\n

Benim i\u00e7in en b\u00fcy\u00fck zorluk 7 ayl\u0131k bebe\u011fimi yard\u0131m almadan kuca\u011f\u0131ma alamamak. Bu durumla ilgili olarak s\u00fcrekli kendimi savunmak zorunda kal\u0131yorum. Ne kadar \u00e7ok insan\u0131n \"ableist\" tav\u0131rlar\u0131 oldu\u011funu hi\u00e7 fark etmemi\u015ftim. Benim i\u00e7in son zorluk ise arkada\u015flar\u0131m\u0131 ve ailemi \u00f6zg\u00fcrce ziyaret edememek.<\/p>\n

En b\u00fcy\u00fck ba\u015far\u0131n\u0131z nedir?<\/strong>:<\/p>\n

\u00c7ok fazla ba\u015far\u0131m var, ancak yaln\u0131zca birini se\u00e7mem gerekseydi SGK'dan kurtulmak i\u00e7in \u00e7al\u0131\u015ft\u0131\u011f\u0131m\u0131 s\u00f6ylerdim. Te\u015fhisimden sonra bir i\u015fim, arabam, evim, kendi ailem vs. olaca\u011f\u0131ndan umudumu kesmi\u015ftim. Bug\u00fcn, eyalet polis memuruyum, araba kullan\u0131yorum, g\u00fczel bir ailem var, \u015fu anda ilk evimi sat\u0131n almak istiyorum ve zaman\u0131 geldi\u011finde ve art\u0131k fiziksel olarak sahip oldu\u011fum i\u015fi yapamad\u0131\u011f\u0131mda Tanr\u0131'n\u0131n ba\u015fka bir f\u0131rsat sa\u011flayaca\u011f\u0131 konusunda iyimserim.<\/p>\n

LGMD bug\u00fcn oldu\u011funuz ki\u015fi olman\u0131zda sizi nas\u0131l etkiledi? <\/strong><\/p>\n

LGMD bana istedi\u011fim \u015fey i\u00e7in nas\u0131l m\u00fccadele edece\u011fimi \u00f6\u011fretti. Bana asla d\u00fc\u015f\u00fcnd\u00fc\u011f\u00fcm kadar s\u0131n\u0131rl\u0131 olmad\u0131\u011f\u0131m\u0131 \u00f6\u011fretti. Her \u015fey m\u00fcmk\u00fcn.<\/p>\n

D\u00fcnyan\u0131n LGMD hakk\u0131nda ne bilmesini istersiniz?<\/strong>:<\/p>\n

Bu LGMD hen\u00fcz tedavi edilemedi ama onlar\u0131n yard\u0131m\u0131yla tedavi edilebilir.<\/p>\n

LGMD hastal\u0131\u011f\u0131n\u0131z yar\u0131n \"tedavi edilebilseydi\", yapmak isteyece\u011finiz ilk \u015fey ne olurdu?<\/strong>:<\/p>\n

K\u00fc\u00e7\u00fck o\u011flumu kuca\u011f\u0131ma al\u0131yorum, ona s\u0131k\u0131ca sar\u0131l\u0131yorum, havaya f\u0131rlat\u0131yorum ve yakal\u0131yorum.<\/p>\n

 <\/p>\n

* * * 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<\/a><\/u><\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name:\u00a0 Fred \u00a0\u00a0Age: 36 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":1632,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-1633","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a-calpainopathy-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Fred - 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=\"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2017\/11\/06\/fred\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Fred - 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