{"id":5855,"date":"2022-08-13T22:20:30","date_gmt":"2022-08-13T22:20:30","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5855"},"modified":"2024-02-09T14:23:52","modified_gmt":"2024-02-09T14:23:52","slug":"5855","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2022\/08\/13\/5855\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Arthur"},"content":{"rendered":"

\"<\/p>\n

\u0130sim<\/strong>: Arthur<\/p>\n

Ya\u015f<\/strong>: \u00a013<\/p>\n

\u00dclke<\/strong>: Fransa<\/p>\n

LGMD Alt Tipi<\/strong>: LGMD 2C\/R5 Gama Sarkoglikan ile ili\u015fkili<\/p>\n

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

Bana 9 ya\u015f\u0131ndayken te\u015fhis konuldu.<\/p>\n

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

K\u00fc\u00e7\u00fckl\u00fc\u011f\u00fcmden beri ko\u015farken ve yerden kalkarken, ayn\u0131 zamanda merdiven \u00e7\u0131karken sorun ya\u015fad\u0131m.<\/p>\n

\u00a0<\/strong>LGMD hastas\u0131 olan ba\u015fka aile \u00fcyeleriniz var m\u0131?<\/strong><\/p>\n

Hay\u0131r, bir k\u0131z karde\u015fim var ama onda LGMD yok.<\/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

\u00c7ocukken ya\u015fad\u0131\u011f\u0131m\u0131z zorluklar\u0131n anla\u015f\u0131lmas\u0131n\u0131 sa\u011flamak kolay de\u011fildir, \u00e7o\u011fu zaman insanlar bedenlerimiz farkl\u0131 \u00e7al\u0131\u015ft\u0131\u011f\u0131 i\u00e7in yapamad\u0131\u011f\u0131m\u0131z \u015feyleri yapmak istemedi\u011fimize inan\u0131rlar.<\/p>\n

Hastal\u0131\u011fa ra\u011fmen her zaman mutlu ve h\u0131rsl\u0131y\u0131m, m\u00fcmk\u00fcn oldu\u011funca uzun s\u00fcre ayakta kalmay\u0131 umuyorum.<\/p>\n

En b\u00fcy\u00fck BA\u015eARINIZ nedir?<\/strong><\/p>\n

Kendi seviyemde ve h\u0131z\u0131mda spor yapmaya \u00e7al\u0131\u015f\u0131yorum, \u00f6zellikle futbol, Frans\u0131z tak\u0131m\u0131n\u0131 ve \u00f6zellikle Paris'i seviyorum. Ne yaz\u0131k ki ko\u015fam\u0131yorum. Kaslar\u0131m beni tutabildi\u011fi s\u00fcrece devam edece\u011fim.<\/p>\n

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

Ben m\u00fccadeleci bir insan\u0131m, hastal\u0131k kar\u015f\u0131s\u0131nda pes etmek istemiyorum, onu yenmek istiyorum. Bu y\u00fczden her zaman pozitif kal\u0131yorum ve hasta insanlar\u0131n zay\u0131flamamak i\u00e7in korumalar\u0131 gereken b\u00fcy\u00fck bir i\u00e7sel g\u00fcce sahip olduklar\u0131n\u0131 g\u00f6r\u00fcyorum. LGMD'li ba\u015fka insanlarla da tan\u0131\u015ft\u0131m ve hepsinde bu i\u00e7sel g\u00fc\u00e7 var ve ben bunu seviyorum.<\/p>\n

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

\u0130nsanlar\u0131n hastal\u0131\u011f\u0131n ciddiyetini ve \u015fu anda \u00e7ocukken \u00e7ok g\u00f6r\u00fcn\u00fcr olmasa bile olabilecek riskleri bilmelerini ve anlamalar\u0131n\u0131 istiyorum. Bunu anlatmak zor \u00e7\u00fcnk\u00fc ba\u015fkalar\u0131 bizim bir \u015feyler yapmak istemedi\u011fimizi d\u00fc\u015f\u00fcn\u00fcyor ve bu durum zihinsel olarak bizi \u00e7ok incitebiliyor.<\/p>\n

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

E\u011fer tedavi olursam, m\u00fcmk\u00fcn oldu\u011funca uzun s\u00fcre d\u00fcz bir \u00e7izgide ko\u015fmak istiyorum. Ayr\u0131ca b\u00fcy\u00fck bir futbolcu olmak ve sahadaki en h\u0131zl\u0131 ki\u015fi olmak istiyorum. Ama ayn\u0131 zamanda nadir hastal\u0131klar\u0131 olan di\u011fer \u00e7ocuklar i\u00e7in de sava\u015fmaya devam etmek istiyorum. Umar\u0131m tedaviler yak\u0131nda gelir.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5856,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,75],"tags":[110],"class_list":["post-5855","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2c","tag-lgmd2c-france"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Arthur - 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\/2022\/08\/13\/5855\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Arthur - 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