{"id":1765,"date":"2018-03-21T12:07:30","date_gmt":"2018-03-21T17:07:30","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1765"},"modified":"2018-03-21T12:07:30","modified_gmt":"2018-03-21T17:07:30","slug":"ralph-2","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2018\/03\/21\/ralph-2\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Ralph"},"content":{"rendered":"

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

\u0130sim<\/strong>: Ralph\u00a0\u00a0\u00a0 YA\u015e<\/strong>: 58 Ya\u015f\u0131nda. Ya\u015fl\u0131\"\"<\/a><\/p>\n

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

LGMD Alt Tip:\u00a0 <\/strong>LGMD2L \/ Anoktaminopati<\/p>\n

 <\/p>\n

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

Semptomlar 2006 y\u0131l\u0131nda 47 ya\u015f\u0131ndayken ba\u015flad\u0131 ve LGMD2L'nin ke\u015ffedildi\u011fi 2011 y\u0131l\u0131nda te\u015fhis konuldu.<\/p>\n

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

Bacak zay\u0131fl\u0131\u011f\u0131. B\u00fcy\u00fck bir halterciydim ve 30'lu ya\u015flar\u0131mda 300 kilo bench press ve 400 kilo squat yap\u0131yordum. Ancak sol baca\u011f\u0131mda g\u00fc\u00e7s\u00fczl\u00fck hissettim ve spor salonuna gidip her seferinde tek bacakla bacak presi yapmaya \u00e7al\u0131\u015ft\u0131m. Sa\u011f baca\u011f\u0131m 250 pound basabiliyordu ama sol baca\u011f\u0131m 150 poundda kal\u0131yordu.<\/p>\n

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

2L ile onaylanm\u0131\u015f bir karde\u015fim var. Ba\u015fkalar\u0131 da olabilir ama hen\u00fcz bilmiyoruz.<\/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

Her durumda etrafta dola\u015fmak. Merdivenler zordur. Sandalyeden kalkmak zor. Y\u00fcr\u00fcmek m\u00fcmk\u00fcn ama daha uzun mesafelerde y\u00fcr\u00fcmek giderek zorla\u015f\u0131yor. Dizler b\u00fck\u00fcl\u00fcrse ya da aya\u011f\u0131n\u0131z tak\u0131l\u0131rsa veya kayarsan\u0131z d\u00fc\u015fmeler her zaman olur.<\/p>\n

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

\u015eu anda MDA Ulusal Toplum Dan\u0131\u015fma Komitesi'nde yer almak ve LGMD2L Vakf\u0131'n\u0131 kurarken di\u011fer baz\u0131 kurulu\u015flarla \u00e7al\u0131\u015fmak da dahil olmak \u00fczere engellilik alan\u0131nda \u00e7ok say\u0131da \u00e7al\u0131\u015fma yap\u0131yorum.<\/p>\n

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

En b\u00fcy\u00fck ba\u015far\u0131m olarak neleri s\u0131ralad\u0131\u011f\u0131ma bakt\u0131\u011f\u0131n\u0131zda, LGMD2L'ye sahip olmam\u0131n beni her t\u00fcrden engelli insan i\u00e7in \u00e7al\u0131\u015fmaya y\u00f6nlendirdi\u011fini s\u00f6yleyebilirsiniz.<\/p>\n

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

Ger\u00e7ek tedavi ve iyile\u015ftirme y\u00f6ntemlerine her ge\u00e7en g\u00fcn daha da yakla\u015f\u0131yoruz ve e\u011fer hep birlikte \u00e7al\u0131\u015f\u0131rsak, kas distrofisini ortadan kald\u0131rmaya y\u00f6nelik bu ba\u015far\u0131, bug\u00fcn ve gelecekte pek \u00e7ok insana ve aileye yard\u0131mc\u0131 olacakt\u0131r.<\/p>\n

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

Gen\u00e7li\u011fimdeki gibi yeniden spor yapmaya ba\u015flayacak ve seyahat etmenin ve d\u00fcnyan\u0131n g\u00fczelliklerinin tad\u0131n\u0131 \u00e7\u0131kar\u0131rken ger\u00e7ek g\u00fc\u00e7 ve sa\u011fl\u0131k olu\u015fturmaya odaklanacakt\u0131m.<\/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>\u00a0 <\/u><\/p>\n

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

LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name:\u00a0 Ralph\u00a0\u00a0\u00a0 AGE: 58 Yrs. Old Country: […]<\/p>","protected":false},"author":1,"featured_media":1764,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,49],"tags":[93],"class_list":["post-1765","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2l","tag-lgmd2l-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Ralph - 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\/2018\/03\/21\/ralph-2\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Ralph - LGMD Awareness Foundation\" \/>\n<meta property=\"og:description\" content=\"LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name:\u00a0 Ralph\u00a0\u00a0\u00a0 AGE: 58 Yrs. 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