{"id":5561,"date":"2021-11-07T23:51:06","date_gmt":"2021-11-07T23:51:06","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5561"},"modified":"2024-02-09T14:23:59","modified_gmt":"2024-02-09T14:23:59","slug":"individual-with-lgmd-osman","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2021\/11\/07\/individual-with-lgmd-osman\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Osman"},"content":{"rendered":"

\"\"<\/p>\n

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

\u0130sim:<\/strong>\u00a0 Osman<\/p>\n

Ya\u015f<\/strong>: 30 ya\u015f\u0131nda<\/p>\n

\u00dclke:<\/strong>\u00a0 T\u00fcrkiye<\/p>\n

LGMD Alt Tip:<\/strong>\u00a0 LGMD2D\/R3 Alfa sarkoglikan ile ili\u015fkili<\/p>\n

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

Bana 16 ya\u015f\u0131mda te\u015fhis konuldu.<\/p>\n

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

Belirtiler on yedi ya\u015f\u0131mda ortaya \u00e7\u0131kmaya ba\u015flad\u0131. Biraz ko\u015ftuktan sonra dinlenme ihtiyac\u0131 hissediyordum. Merdiven \u00e7\u0131karken yoruluyordum. Birka\u00e7 y\u0131l sonra merdiven \u00e7\u0131karken ya da oturdu\u011fum yerden kalkarken tutunmaya ba\u015flad\u0131m. Yirmi be\u015f ya\u015f\u0131mda \u00f6ne do\u011fru e\u011filememeye ba\u015flad\u0131m ve d\u00fc\u015fmemek i\u00e7in yava\u015f y\u00fcr\u00fcmeye ba\u015flad\u0131m.<\/p>\n

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

Evet, k\u0131z karde\u015fime de LGMD2D\/R3 te\u015fhisi kondu.<\/p>\n

LGMD ile ya\u015faman\u0131n en b\u00fcy\u00fck zorluklar\u0131n\u0131n neler oldu\u011funu d\u00fc\u015f\u00fcn\u00fcyorsunuz?<\/strong><\/p>\n

En b\u00fcy\u00fck zorluklar g\u00fcnl\u00fck ya\u015fam aktiviteleriyle ilgili. Ailemle istedi\u011fim yere gidememek ve bir yere tutunmadan merdiven \u00e7\u0131kamamak.<\/p>\n

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

En b\u00fcy\u00fck ba\u015far\u0131m bir bilgisayar m\u00fchendisi olmak ve LGMD T\u00fcrkiye derne\u011finin kurulmas\u0131na yard\u0131mc\u0131 olmakt\u0131r<\/p>\n

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

Fark\u0131ndal\u0131\u011f\u0131 y\u00fcksek bir insan oldum. Elimden geldi\u011fince her durumda di\u011fer insanlara yard\u0131m etmeye \u00e7al\u0131\u015f\u0131yorum. Hastal\u0131\u011f\u0131m\u0131 ve di\u011fer hastal\u0131klar\u0131 di\u011fer insanlara duyurmaya \u00e7al\u0131\u015f\u0131yorum.<\/p>\n

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

D\u00fcnyan\u0131n LGMD hakk\u0131nda her \u015feyi bilmesini istiyorum - semptomlar, zorluklar, y\u00f6netim, rehabilitasyon, en son bilimsel ara\u015ft\u0131rmalar ve bu ilerleyici n\u00f6rom\u00fcsk\u00fcler hastal\u0131ktan etkilenen bireylere ve ailelere biraz rahatlama sa\u011flaman\u0131n yan\u0131 s\u0131ra fark\u0131ndal\u0131\u011f\u0131 art\u0131rmak i\u00e7in \u00e7al\u0131\u015fan organizasyon.<\/p>\n

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

E\u011fer iyile\u015firsem hi\u00e7 durmadan ko\u015fmak ve daha \u00f6nce korktu\u011fum yerlerde merdiven \u00e7\u0131kmak istiyorum.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5560,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,28],"tags":[108],"class_list":["post-5561","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2d","tag-lgmd2d-turkey"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Osman - 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\/2021\/11\/07\/individual-with-lgmd-osman\/\" 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