{"id":5172,"date":"2021-05-17T20:23:28","date_gmt":"2021-05-17T20:23:28","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5172"},"modified":"2024-02-09T14:24:21","modified_gmt":"2024-02-09T14:24:21","slug":"5172","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2021\/05\/17\/5172\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Maria"},"content":{"rendered":"
\"Lgmd1b<\/span><\/div>

\u00a0<\/strong><\/p>\n

\u0130sim<\/strong>: Maria Ya\u015f<\/strong>: 29 ya\u015f\u0131nda<\/p>\n

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

LGMD Alt Tipi<\/strong>: LGMD 1B<\/p>\n

 <\/p>\n

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

\u0130lk olarak iki ya\u015f\u0131ndayken SMA te\u015fhisi konuldu. Daha sonra 15 ya\u015f\u0131nda ekstremite-girdle musk\u00fcler distrofi te\u015fhisi kondu.<\/p>\n

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

Ailem 17 aya kadar y\u00fcr\u00fcmedi\u011fimi s\u00f6yledi. Ayr\u0131ca paytak paytak y\u00fcr\u00fcyordum ve y\u00fcr\u00fcmeye yeni ba\u015flam\u0131\u015f bir \u00e7ocukken oturdu\u011fum yerden kalkmak i\u00e7in kollar\u0131m\u0131 kullan\u0131yordum.<\/p>\n

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

Hay\u0131r, ailemde LGMD hastas\u0131 olan tek ki\u015fi benim.<\/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

Zihinsel olarak: Normal bir hayat ya\u015famad\u0131\u011f\u0131m\u0131z varsay\u0131m\u0131 benim i\u00e7in en b\u00fcy\u00fck zorluk. Fiziksel olarak: Bir \u015feylerin zay\u0131flad\u0131\u011f\u0131n\u0131 fark etti\u011fimde ilerlemeyi kabullenmeyi \u00f6\u011frenmek.<\/p>\n

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

Ehliyetimi ve kendi arabam\u0131 ald\u0131m. Bunu yapma s\u00fcreci iki y\u0131l gibi uzun bir zaman ald\u0131. Sanki hi\u00e7 sonu gelmeyecekmi\u015f gibi hissediyordum. Arabam\u0131n olmas\u0131 hayat\u0131m\u0131 de\u011fi\u015ftirdi ve m\u00fcmk\u00fcn oldu\u011funca ba\u011f\u0131ms\u0131z kalmama yard\u0131mc\u0131 oluyor.<\/p>\n

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

Ki\u015fili\u011fimi ve kim oldu\u011fumu kesinlikle \u015fekillendirdi. Sert ki\u015fili\u011fim, ba\u015fkalar\u0131na yapabilece\u011fimizi g\u00f6sterme kararl\u0131l\u0131\u011f\u0131mdan geliyor. Tutkulu taraf\u0131m ise \u00e7ocuklu\u011fumdan beri m\u00fccadele etmemden kaynaklan\u0131yor. Engelli olarak b\u00fcy\u00fcmek beni hayal edebilece\u011fimden \u00e7ok daha fazla \u015fekilde \u015fekillendirdi. Bu hastal\u0131\u011f\u0131n beni herkesin tan\u0131d\u0131\u011f\u0131 Maria haline getirdi\u011fini biliyorum.<\/p>\n

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

\u0130nsanlar\u0131n bunun nadir bir hastal\u0131k olarak kabul edildi\u011fini, dolay\u0131s\u0131yla tedavisi ya da \u00e7aresi olmad\u0131\u011f\u0131n\u0131 bilmelerini istiyorum. Ayr\u0131ca, da\u011flar\u0131n tepesinden bunun MS olmad\u0131\u011f\u0131n\u0131 hayk\u0131rmak istiyorum!<\/p>\n

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

Be\u015f ye\u011fenimi almak i\u00e7in ko\u015fard\u0131m. Al\u0131\u015fveri\u015f merkezine gider ve hi\u00e7bir \u015feyin i\u00e7ine s\u0131\u011famayacak kadar zay\u0131f olma endi\u015fesi olmadan bir k\u0131yafet se\u00e7erdim. Sonra da muhtemelen putt putt oynamaya giderdim. Bu kesinlikle \u00f6zledi\u011fim bir \u015fey ve eskiden \u00e7ocuklu\u011fumun b\u00fcy\u00fck bir par\u00e7as\u0131yd\u0131. Babam k\u0131z karde\u015flerimle beni \u00e7ocukken neredeyse her hafta g\u00f6t\u00fcr\u00fcrd\u00fc ve bu da benim en sevdi\u011fim \u015feylerden biri haline geldi.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5173,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,44],"tags":[],"class_list":["post-5172","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd1b"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD:\u00a0 Maria - 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\/05\/17\/5172\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD:\u00a0 Maria - 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