{"id":418,"date":"2015-03-01T16:17:22","date_gmt":"2015-03-01T22:17:22","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=303"},"modified":"2015-03-01T16:17:22","modified_gmt":"2015-03-01T22:17:22","slug":"julianna","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2015\/03\/01\/julianna\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Julianna"},"content":{"rendered":"

03\/01\/2015:<\/p>\n

ADI: Julianna YA\u015e: 24\"LGMD2B<\/a>
\n\u00dcLKE: Amerika Birle\u015fik Devletleri
\nLGMD Alt Tipi: LGMD2B<\/p>\n

\n

KA\u00c7 YA\u015eINDA TE\u015eHIS KONULDU?
\nBelirtilerim 16 ya\u015f\u0131nda ba\u015flad\u0131 ancak yakla\u015f\u0131k 22 ya\u015f\u0131ma kadar te\u015fhis konulamad\u0131.<\/p>\n

\u0130LK BELIRTILERINIZ NEYDI?
\n\u0130lk belirtim tendonlar\u0131m\u0131n gerilmesiydi. Doktorum beni fizik tedaviye g\u00f6nderdi ama bunun pek faydas\u0131 olmad\u0131. Daha sonra A\u015fil tendonlar\u0131m\u0131 uzatman\u0131n en iyisi olaca\u011f\u0131n\u0131 d\u00fc\u015f\u00fcnd\u00fck. Ameliyat oldum ve her bir baca\u011f\u0131m iki ay boyunca al\u00e7\u0131da kald\u0131. \u0130yile\u015firken ve tekrar fizik tedaviye ba\u015flarken, fizyoterapistim g\u00fcc\u00fcm\u00fcn hi\u00e7birini geri kazanmad\u0131\u011f\u0131m\u0131 fark etti. Daha ileri testler i\u00e7in beni bir n\u00f6rolo\u011fa g\u00f6nderdi.<\/p>\n

LGMD'L\u0130 BA\u015eKA A\u0130LE \u00dcYELER\u0130N\u0130Z VAR MI: hay\u0131r<\/p>\n

LGMD I\u0307LE YA\u015eARKEN KAR\u015eILA\u015eTI\u011eINIZ EN B\u00dcY\u00dcK ZORLUKLARIN NELER OLDU\u011eUNU D\u00dc\u015e\u00dcN\u00dcYORSUNUZ:
\nLGMD ile ya\u015faman\u0131n en b\u00fcy\u00fck zorlu\u011funun insanlar\u0131n bunu anlamakta zorlanmas\u0131 oldu\u011funu d\u00fc\u015f\u00fcn\u00fcyorum. LGMD'yi birine tarif etmek kolay de\u011fil. Bir\u00e7ok insan bu hastal\u0131\u011f\u0131 abartt\u0131\u011f\u0131m\u0131, hatta yalan s\u00f6yledi\u011fimi d\u00fc\u015f\u00fcn\u00fcyor. Hala hareket edebiliyorum, bu nedenle herhangi bir zorluk ya\u015famad\u0131\u011f\u0131m\u0131 d\u00fc\u015f\u00fcn\u00fcyorlar. Ke\u015fke insanlar bu hastal\u0131klar\u0131 \u00f6\u011frenmeye ve ne kadar zor oldu\u011funu anlamaya daha a\u00e7\u0131k olsalar.<\/p>\n

EN B\u00dcY\u00dcK BA\u015eARINIZ NEDIR?
\nEn b\u00fcy\u00fck ba\u015far\u0131m \u00fcniversiteden mezun olmakt\u0131. Okul \u00f6devlerimle yapt\u0131rd\u0131\u011f\u0131m t\u0131bbi testler aras\u0131nda hokkabazl\u0131k yap\u0131yordum. Zaman zaman ayak uydurmak zordu ama \u00fcstesinden gelmeyi ve okul organizasyonlar\u0131na kat\u0131lmay\u0131 ba\u015fard\u0131m. Gamma Sigma Sigma'ya (bir hizmet karde\u015fli\u011fi) kat\u0131ld\u0131m ve Birle\u015fik \u00d6\u011frenciler H\u00fck\u00fcmeti'nin etkinlik konseyi ba\u015fkan\u0131yd\u0131m. Prestijli bir konu\u015fmac\u0131 ve konser gibi etkinlikler planlama f\u0131rsat\u0131m oldu. Uzuv Korsesi beni ger\u00e7ekten istedi\u011fim \u015feyin pe\u015finden gitmekten al\u0131koymad\u0131. Elimde diplomamla o sahnede y\u00fcr\u00fcmek asla unutamayaca\u011f\u0131m bir duyguydu.<\/p>\n

LGMD BUG\u00dcN OLDU\u011eUNUZ KI\u015eI OLMANIZDA SIZI NASIL ETKILEDI?
\nLGMD bana ba\u015fkalar\u0131na ve onlar\u0131n hikayelerine kar\u015f\u0131 daha anlay\u0131\u015fl\u0131 olmay\u0131 \u00f6\u011fretti. Herkesin bilmedi\u011fimiz bir hikayesi var. Ayr\u0131ca bana kendim hakk\u0131nda da \u00e7ok \u015fey \u00f6\u011fretti. K\u00fc\u00e7\u00fck aksiliklere ra\u011fmen neleri ba\u015farabilece\u011fimi \u00f6\u011frendim. Zor zamanlar\u0131 atlatmak i\u00e7in mizah duygusu kesinlikle bir zorunluluk. Sab\u0131rl\u0131 olmay\u0131 ve herkesin bir yard\u0131m eline ihtiyac\u0131 oldu\u011fu ger\u00e7e\u011fini kabul etmeyi \u00f6\u011frendim!<\/p>\n

D\u00dcNYANIN LGMD HAKKINDA NE BI\u0307LMESI\u0307NI\u0307 I\u0307STI\u0307YORSUNUZ?
\n\u0130nsanlar\u0131n bilmesini isterim ki, g\u00f6remiyor olman\u0131z orada olmad\u0131\u011f\u0131 anlam\u0131na gelmez! Bu hastal\u0131\u011f\u0131 size a\u00e7\u0131klayan insanlara kar\u015f\u0131 sab\u0131rl\u0131 ve anlay\u0131\u015fl\u0131 olmaya \u00e7al\u0131\u015f\u0131n. Sizin i\u00e7in anlamak ne kadar zorsa bizim i\u00e7in de a\u00e7\u0131klamak o kadar zor.<\/p>\n

LGMD HASTALI\u011eINIZ YARIN \"TEDAVI\u0307\" EDI\u0307LEBI\u0307LECEK OLSA, YAPMAK I\u0307STEYECE\u011eI\u0307NI\u0307Z I\u0307LK \u015eEY NE OLURDU?
\nYapmak istedi\u011fim ilk \u015fey, t\u00fcm zorluklar olmadan seyahat etmek olurdu. Yard\u0131ma ihtiya\u00e7 duymadan sahile gitmek ve y\u00fczmek isterdim. Her k\u00fc\u00e7\u00fck ayr\u0131nt\u0131y\u0131 \u00f6nceden planlamak zorunda kalmadan istedi\u011fim yere gidebilmek g\u00fczel olurdu; sadece endi\u015felenmeyin ve iyi vakit ge\u00e7irin!<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"

03\/01\/2015: NAME: Julianna AGE: 24 COUNTRY: United States LGMD Sub-Type: […]<\/p>","protected":false},"author":1,"featured_media":304,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[23,16],"class_list":["post-418","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2b","tag-united-states"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Julianna<\/title>\n<meta name=\"description\" content=\"Julianna, who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares her experience in living with this progressive neuro-muscular disease.\" \/>\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\/2015\/03\/01\/julianna\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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