{"id":2303,"date":"2018-10-08T09:01:34","date_gmt":"2018-10-08T14:01:34","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2303"},"modified":"2018-10-08T09:01:34","modified_gmt":"2018-10-08T14:01:34","slug":"dan","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2018\/10\/08\/dan\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Dan"},"content":{"rendered":"

LGMD \"Spotlight r\u00f6portaj\u0131\"<\/strong><\/p>\n

\u0130sim<\/strong>: Dan \u00a0Ya\u015f<\/strong>: 40 Ya\u015f\u0131nda. Ya\u015fl\u0131\u00a0\u00a0\"\"<\/a><\/p>\n

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

LGMD Alt Tipi<\/strong>: LGMD2i<\/p>\n

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

Bana 30 ya\u015f\u0131mda te\u015fhis konuldu.<\/p>\n

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

\u0130lk belirtim bacak g\u00fc\u00e7s\u00fczl\u00fc\u011f\u00fcyd\u00fc. Bir rulo hal\u0131n\u0131n \u00fczerine bast\u0131\u011f\u0131m\u0131 ve baca\u011f\u0131m tutmad\u0131\u011f\u0131 i\u00e7in yere d\u00fc\u015ft\u00fc\u011f\u00fcm\u00fc hat\u0131rl\u0131yorum. Al\u0131\u015f\u0131lmad\u0131k bir y\u00fcr\u00fcy\u00fc\u015fle y\u00fcr\u00fcyordum. Ve kendimi yukar\u0131 \u00e7ekmek i\u00e7in bacaklar\u0131m\u0131 tutmadan oturup kalkam\u0131yordum.<\/p>\n

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

Hay\u0131r, ailemde LGMD hastas\u0131 olan tek ki\u015fi benim.<\/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

Kesinlikle, merdivenler \u015fu anda benim i\u00e7in en b\u00fcy\u00fck zorluk. Asl\u0131nda, 3\u2033'den daha y\u00fcksek bir r\u0131ht\u0131 olan herhangi bir basamak ya son derece zordur ya da hi\u00e7 \u00e7\u0131k\u0131lmaz. \u0130lk ba\u015flarda, bir dizi merdiveni \u00e7\u0131kmak i\u00e7in korkuluktaki kollar\u0131m\u0131 kullanarak bacak g\u00fc\u00e7s\u00fczl\u00fc\u011f\u00fcm\u00fc telafi ederdim, ancak son birka\u00e7 y\u0131lda kol g\u00fcc\u00fcm tehlikeye girdi.<\/p>\n

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

Ba\u015fard\u0131\u011f\u0131m pek \u00e7ok k\u00fc\u00e7\u00fck zaferim var. Bunlardan biri New York'taki Brooklyn K\u00f6pr\u00fcs\u00fc'n\u00fc y\u00fcr\u00fcyerek ge\u00e7ebilmek. Yine de en b\u00fcy\u00fck ba\u015far\u0131m, durumumu (LGMD) kabul etmek ve kucaklamak olacakt\u0131r, bunu yaparak hayat\u0131mda \u00e7ok daha fazla kap\u0131 ve olas\u0131l\u0131k a\u00e7t\u0131m. Durumumun bir insan olarak kim oldu\u011fumu tan\u0131mlamad\u0131\u011f\u0131n\u0131 \u00f6\u011frendim.<\/p>\n

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

LGMD bana hayat\u0131mda pek \u00e7ok \u015fey \u00f6\u011fretti, bunlardan en b\u00fcy\u00fc\u011f\u00fc sab\u0131r. Her zaman sab\u0131rl\u0131 bir insan olmu\u015fumdur, ancak baz\u0131 \u015feylerin benim zaman \u00e7izelgeme g\u00f6re ger\u00e7ekle\u015fmedi\u011fini, ben haz\u0131r oldu\u011fumda ger\u00e7ekle\u015fti\u011fini \u00f6\u011frendim.<\/p>\n

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

    \n
  1. Ekstremite Ku\u015fa\u011f\u0131 Kas Distrofisi bir giysi de\u011fildir.<\/li>\n
  2. LGMD sadece bir test, hepimiz hayatta bir t\u00fcr testten ge\u00e7iyoruz, benimki LGMD. Nas\u0131l tepki verece\u011fim ve bu konuda ne yapaca\u011f\u0131m bir \"se\u00e7im\" meselesi. Ba\u015fkalar\u0131ndan daha az\u0131n\u0131 yapmaya hakk\u0131m yok. Evet, bende Limb Girdle Muscular Dystrophy var ama o asla bana sahip olamayacak.<\/li>\n<\/ol>\n

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

    Ben ko\u015fuya \u00e7\u0131kard\u0131m!<\/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><\/p>","protected":false},"excerpt":{"rendered":"

    LGMD \u201cSpotlight interview\u201d Name:\u00a0 Dan \u00a0Age:\u00a0 40 Yrs. Old\u00a0\u00a0 Country: […]<\/p>","protected":false},"author":1,"featured_media":2302,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,35],"tags":[83],"class_list":["post-2303","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":"\nINDIVIDUAL WITH LGMD: Dan - 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\/2018\/10\/08\/dan\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Dan - LGMD Awareness Foundation\" \/>\n<meta property=\"og:description\" content=\"LGMD \u201cSpotlight interview\u201d Name:\u00a0 Dan \u00a0Age:\u00a0 40 Yrs. 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