{"id":2781,"date":"2019-09-12T11:55:24","date_gmt":"2019-09-12T16:55:24","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2781"},"modified":"2019-09-12T11:55:24","modified_gmt":"2019-09-12T16:55:24","slug":"individual-with-lgmd-tasha-2","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/uncategorized\/2019\/09\/12\/individual-with-lgmd-tasha-2\/","title":{"rendered":"LGMD'li Birey: Tasha"},"content":{"rendered":"

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

\"\"<\/figure>\n\n\n\n

\u0130sim<\/strong>: Tasha              Ya\u015f<\/strong>: 46<\/p>\n\n\n\n

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

LGMD Alt Tipi<\/strong>: LGMD2L\n<\/p>\n\n\n\n

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

Bana 13 ya\u015f\u0131nda te\u015fhis konuldu ama o zamandan beri sorunlar\u0131m vard\u0131\n8 ya\u015flar\u0131nda.\nb\u00fcy\u00fcme sanc\u0131lar\u0131 ve ard\u0131ndan birka\u00e7 yanl\u0131\u015f te\u015fhis konuldu. 13 ya\u015f\u0131ndayken kan de\u011ferlerime bak\u0131ld\u0131.\nve grafik d\u0131\u015f\u0131ndayd\u0131.<\/p>\n\n\n\n

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

Her iki bald\u0131r\u0131mda da g\u00fc\u00e7s\u00fczl\u00fck ve korkun\u00e7 a\u011fr\u0131lar ya\u015fad\u0131m.\negzersizden sonra kaslar.<\/p>\n\n\n\n

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

Evet, k\u00fc\u00e7\u00fck karde\u015fimde de ayn\u0131 LGMD2L te\u015fhisi var. Tamamen farkl\u0131 bir ilerleme g\u00f6sterdi\nve kas atrofisi seviyesi. Benim ya\u015fl\u0131\nK\u0131z karde\u015fimde yok. \u0130kimde de\nebeveynleri ta\u015f\u0131y\u0131c\u0131yd\u0131.<\/p>\n\n\n\n

En b\u00fcy\u00fck zorluklar olarak neleri g\u00f6r\u00fcyorsunuz?\nLGMD ile ya\u015famda<\/strong>:<\/p>\n\n\n\n

Bu hastal\u0131kla ilgili en b\u00fcy\u00fck zorluklar\u0131m yorgunluk ve\nAc\u0131. Ve insanlar anlam\u0131yor.<\/p>\n\n\n\n

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

Her g\u00fcn \u00e7al\u0131\u015fmaya ve egzersiz yapmaya devam ediyorum.<\/p>\n\n\n\n

LGMD sizi nas\u0131l etkiledi?\nBug\u00fcn oldu\u011fun ki\u015fi:<\/strong><\/p>\n\n\n\n

Depends! Kendim ve sa\u011fl\u0131\u011f\u0131m i\u00e7in bir savunucu olmam\u0131 sa\u011flad\u0131. Daha erken olmasa bile yeti\u015fkinlikte tekerlekli sandalyede olaca\u011f\u0131m s\u00f6ylendi. Kariyerimi de buna g\u00f6re planlamam s\u00f6ylendi. Ard\u0131ndan t\u00fcm spor ve aktivitelerimi durdurmam s\u00f6ylendi. 13 ya\u015f\u0131nda bir \u00e7ocuk olarak bunun \u00e7ocuklu\u011fum \u00fczerinde derin etkileri oldu, \u00e7\u00fcnk\u00fc sporla yo\u011fun bir \u015fekilde ilgileniyordum ve bu sporlarda - \u00f6zellikle de futbolda - ger\u00e7ekten iyiydim. Kendimi delirtmemek i\u00e7in doktorun tavsiyesini g\u00f6rmezden geldim ve yine de yapt\u0131m. \u00dcniversite boyunca ve sonras\u0131nda futbol oynad\u0131m. Bunun bana genel olarak tutumum ve fiziksel sa\u011fl\u0131\u011f\u0131m konusunda yard\u0131mc\u0131 oldu\u011funa inan\u0131yorum. Sonras\u0131nda s\u0131k s\u0131k incindim ve y\u00fcr\u00fcmekte zorland\u0131m ama genel olarak sa\u011fl\u0131kl\u0131 kalmama ve kaslar\u0131m\u0131 aktif tutmama yard\u0131mc\u0131 oldu\u011funu d\u00fc\u015f\u00fcn\u00fcyorum. Hala egzersiz yap\u0131yorum ve a\u00e7\u0131k havada aktivitelerde bulunuyorum, ancak iyile\u015fme s\u00fcrem daha uzun. Ben bir muhasebeciyim ve bunun k\u0131smen yeteneklerimden kaynakland\u0131\u011f\u0131n\u0131 hissediyorum. LGMD'nin beni genel olarak daha g\u00fc\u00e7l\u00fc bir insan yapt\u0131\u011f\u0131na inan\u0131yorum. <\/p>\n\n\n\n

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

\u0130lk olarak, \u00e7o\u011funlukla Duchenne MD hakk\u0131nda fark\u0131ndal\u0131k \u00f6n plana \u00e7\u0131kar\u0131lm\u0131\u015f olsa da, bunun ba\u015fl\u0131ca nedeni her y\u0131l Jerry Lewis Teletonlar\u0131d\u0131r. Benim gibi insanlar\u0131n sahip oldu\u011fu.... ara\u015ft\u0131rmaya ihtiya\u00e7 duyan ba\u015fka bir\u00e7ok kas distrofisi t\u00fcr\u00fc de var. \u0130nsanlar ac\u0131 \u00e7ekiyor ve tedavisi yok! Ayr\u0131ca LGMD'de insanlar\u0131n engelli olduklar\u0131n\u0131n her zaman belli olmad\u0131\u011f\u0131n\u0131 fark ettim. Yani.... tamamen normal g\u00f6r\u00fcn\u00fcyorum ama insanlar\u0131n fark etmedi\u011fi \u00e7e\u015fitli sorunlar\u0131m var. Tekerlekli sandalyede olmad\u0131\u011f\u0131m i\u00e7in baz\u0131 insanlar numara yapt\u0131\u011f\u0131m\u0131 d\u00fc\u015f\u00fcn\u00fcyor. Art\u0131k merdiven \u00e7\u0131kam\u0131yorum ve asans\u00f6r olmad\u0131\u011f\u0131 i\u00e7in bir\u00e7ok i\u015f f\u0131rsat\u0131n\u0131 geri \u00e7evirmek zorunda kald\u0131m.<\/p>\n\n\n\n

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

D\u00fcnyaya s\u00f6ylerdim.....<\/p>\n\n\n\n

* * * Daha fazla \"LGMD Spotlight R\u00f6portajlar\u0131\" okumak i\u00e7in veya\nyakla\u015fan bi\u0307r r\u00f6portajda yer almak i\u0307\u00e7i\u0307n g\u00f6n\u00fcll\u00fc olmak i\u0307sti\u0307yorsaniz l\u00fctfen web si\u0307temi\u0307zi\u0307 zi\u0307yaret edi\u0307n\nat: https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a>  <\/p>\n\n\n\n

* * * Fark\u0131ndal\u0131k yaratmaya yard\u0131mc\u0131 olmak i\u00e7in l\u00fctfen bu g\u00f6nderiyi BE\u011eEN\u0130N, YORUM YAPIN ve PAYLA\u015eIN\nLGMD'nin!
\n
\n<\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name:  Tasha              Age: 46 Country: United States […]<\/p>","protected":false},"author":1,"featured_media":2782,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,49,1],"tags":[93],"class_list":["post-2781","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2l","category-uncategorized","tag-lgmd2l-united-states"],"acf":[],"yoast_head":"\nIndividual with LGMD: Tasha - 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\/uncategorized\/2019\/09\/12\/individual-with-lgmd-tasha-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: Tasha - 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