{"id":419,"date":"2015-03-12T21:50:04","date_gmt":"2015-03-13T02:50:04","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=312"},"modified":"2015-03-12T21:50:04","modified_gmt":"2015-03-13T02:50:04","slug":"donavon","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Donavon"},"content":{"rendered":"

03\/12\/2015:<\/p>\n

\u0130sim<\/strong>: Donavon\u00a0 Ya\u015f<\/strong>: 52\"LGMD2D<\/a><\/p>\n

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

LGMD Alt Tipi<\/strong>: LGMD2D<\/p>\n

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

Bana 16 ya\u015f\u0131nda te\u015fhis konuldu.<\/p>\n

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

Hi\u00e7bir zaman \u00e7ok h\u0131zl\u0131 ko\u015famad\u0131m ve merdiven \u00e7\u0131karken sorun ya\u015fad\u0131m. Zaman\u0131n bir k\u0131sm\u0131nda bir \u00e7iftlikte ya\u015f\u0131yorduk ve i\u015f ev i\u015flerine geldi\u011finde dolu bir yem torbas\u0131n\u0131 kald\u0131ram\u0131yordum.<\/p>\n

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

Evet, LGMD hastas\u0131 d\u00f6rt k\u0131z karde\u015fim ve iki ye\u011fenim var.<\/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

Y\u0131llar boyunca ihtiya\u00e7 duydu\u011fum t\u00fcm yard\u0131mlar ve her y\u0131l daha da artmaya devam ediyor. Harika e\u015fim ve y\u0131llar boyunca bana yard\u0131mc\u0131 olan harika arkada\u015flar\u0131m i\u00e7in \u00e7ok m\u00fcte\u015fekkirim. K\u0131z karde\u015fim Monica 2012 y\u0131l\u0131nda LGMD komplikasyonlar\u0131 nedeniyle vefat etti, bu y\u00fczden zay\u0131flad\u0131\u011f\u0131m\u0131 bilmek akl\u0131m\u0131n bir k\u00f6\u015fesinde.<\/p>\n

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

Musk\u00fcler Distrofi i\u00e7in gen terapisi yap\u0131lan ilk ki\u015fi olmak. Gen bozuklu\u011fum tespit edildikten sonra her ay bir doktor \u00e7a\u011f\u0131rd\u0131m ve ilk denemeye ba\u015flad\u0131klar\u0131nda g\u00f6n\u00fcll\u00fc oldum. Gen terapisi, Birle\u015fik Devletler Senatosu'nda ifade verirken bana pek \u00e7ok f\u0131rsat sundu. Washington DC'de ilk MD Bak\u0131m Yasas\u0131 i\u00e7in lobi \u00e7al\u0131\u015fmalar\u0131na yard\u0131mc\u0131 oldum. Ayr\u0131ca alt\u0131 y\u0131l boyunca Ulusal Sa\u011fl\u0131k Enstit\u00fcleri'nde bir g\u00f6zetim komitesinde g\u00f6rev yapt\u0131m.<\/p>\n

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

LGMD nedeniyle i\u015f bulmak i\u00e7in daha fazla m\u00fccadele etmem gerekti\u011fini d\u00fc\u015f\u00fcn\u00fcyorum... Baz\u0131 insanlar Musk\u00fcler Distrofi oldu\u011fumu duyunca ya da beni tekerlekli sandalyede g\u00f6r\u00fcnce hi\u00e7bir \u015fey yapamayaca\u011f\u0131m\u0131 d\u00fc\u015f\u00fcn\u00fcyor. Sonu\u00e7 olarak hayat\u0131m\u0131n bir\u00e7ok alan\u0131nda \u00e7ok kararl\u0131 ve iyimser bir yakla\u015f\u0131m geli\u015ftirdim. Engelli olan di\u011fer insanlara farkl\u0131 g\u00f6zle bak\u0131yorum \u00e7\u00fcnk\u00fc onlar\u0131n g\u00fcnl\u00fck olarak ya\u015fad\u0131klar\u0131 baz\u0131 zorluklar\u0131 biliyorum. Hristiyan oldu\u011fum i\u00e7in \u015f\u00fckrediyorum \u00e7\u00fcnk\u00fc bir g\u00fcn ben hayattayken bir tedavi bulunmazsa cennette hi\u00e7bir hastal\u0131k olmayacak.<\/p>\n

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

Bir tedaviye ya da iyile\u015ftirmeye \u00e7ok yak\u0131n oldu\u011fumuza inan\u0131yorum. 1999'da ilk gen terapisi denemesinde yer alm\u0131\u015ft\u0131m ve yeni vekt\u00f6r\u00fc vermek i\u00e7in kan sistemini kullanacaklar\u0131 bir sonraki gen terapisi denemesinin ba\u015flad\u0131\u011f\u0131n\u0131 g\u00f6rmek beni \u00e7ok heyecanland\u0131r\u0131yor.<\/p>\n

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

Minib\u00fcs kullanmak yerine araba ya da pikap kullanmak. Bir g\u00fcn ba\u015fka bir Pontiac GTO'ya sahip olmak istiyorum.<\/p>","protected":false},"excerpt":{"rendered":"

03\/12\/2015: Name: Donavon\u00a0 Age: 52 Country: United States LGMD Sub-Type: […]<\/p>","protected":false},"author":1,"featured_media":313,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,28],"tags":[29,16],"class_list":["post-419","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2d","tag-lgmd2d","tag-united-states"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Donavon<\/title>\n<meta name=\"description\" content=\"Donavon, who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares his 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\/12\/donavon\/\" \/>\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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