{"id":5212,"date":"2021-03-03T18:35:03","date_gmt":"2021-03-03T18:35:03","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5212"},"modified":"2024-02-09T14:24:22","modified_gmt":"2024-02-09T14:24:22","slug":"individual-with-lgmd-kae","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2021\/03\/03\/individual-with-lgmd-kae\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Kae"},"content":{"rendered":"
\"Lgmd2b<\/span><\/div>

\u0130sim<\/strong>: Kae\u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 Ya\u015f<\/strong>: 29 yrs. old<\/p>\n

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

LGMD Alt Tipi<\/strong>: LGMD 2B\/R2 Dysferlin ile ili\u015fkili \/ Miyoshi Miyopatisi<\/p>\n

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

Bana 17 ya\u015f\u0131ndayken LGMD te\u015fhisi kondu.<\/p>\n

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

Parmak u\u00e7lar\u0131mda y\u00fcr\u00fcyememek, y\u00fckse\u011fe z\u0131playamamak, bir seferde 2 basamak \u00e7\u0131kamamak veya h\u0131zl\u0131 ko\u015famamak<\/p>\n

14 ya\u015f civar\u0131nda.<\/p>\n

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

Evet, a\u011fabeyimde de LGMD var.<\/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\u00fcvenlik ve ba\u011f\u0131ms\u0131zl\u0131k... bunu sosyal\/romantik\/istihdam boyutu takip ediyor.<\/p>\n

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

On sekiz ya\u015f\u0131nda evden ayr\u0131ld\u0131m, lisans diplomam\u0131, tam ehliyetimi ald\u0131m, kendi arabama sahip oldum ve kendi serbest \u00e7al\u0131\u015fma\/avukatl\u0131k kariyerimi kurdum.<\/p>\n

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

Ger\u00e7ekten de hayattaki k\u00fc\u00e7\u00fck \u015feyleri hafife almamam\u0131 sa\u011flad\u0131... Her g\u00fcn \u015f\u00fckran ve fark\u0131ndal\u0131k prati\u011fi yap\u0131yorum. Olabilece\u011fimi hayal etti\u011fimden daha yetenekli ve daha g\u00fc\u00e7l\u00fc oldu\u011fumu \u00f6\u011frendim. Art\u0131k zorluklarla olduk\u00e7a iyi ba\u015fa \u00e7\u0131k\u0131yorum ve bu yolculuk sayesinde \u00e7ok daha ruhani bir insan oldum. Ayr\u0131ca ruh sa\u011fl\u0131\u011f\u0131ma \u00f6ncelik vermenin ve kontrol edebildi\u011fim \u015feylere odaklanman\u0131n de\u011ferini de \u00f6\u011frendim.<\/p>\n

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

\u0130zole edici, g\u00f6r\u00fcnmez bir hastal\u0131k\/engellilik olabilir... Bu konuda konu\u015fmuyor olmam\u0131z, onun hakk\u0131nda konu\u015fmad\u0131\u011f\u0131m\u0131z anlam\u0131na gelmez.<\/p>\n

m\u00fccadele etmemek ve bunun bizi zihinsel\/duygusal olarak da etkilememesi. Daha fazlas\u0131 i\u00e7in g\u00f6r\u00fclmek istiyoruz<\/p>\n

Engelli olmam\u0131zdan ziyade, ya\u015fad\u0131\u011f\u0131m\u0131z zorluklar\u0131 da kabul etmenizi ve anlaman\u0131z\u0131 istiyoruz.<\/p>\n

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

Dans ederdim!<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5213,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[],"class_list":["post-5212","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Kae - 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\/03\/03\/individual-with-lgmd-kae\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" 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