{"id":3769,"date":"2020-12-03T09:38:38","date_gmt":"2020-12-03T15:38:38","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3769"},"modified":"2024-02-09T14:24:25","modified_gmt":"2024-02-09T14:24:25","slug":"individual-with-lgmd-saira","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2020\/12\/03\/individual-with-lgmd-saira\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY - Saira"},"content":{"rendered":"

\"\"<\/a><\/strong><\/p>\n

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

Ya\u015f<\/strong>: 29<\/p>\n

\u00dclke<\/strong>: BAE'de ya\u015fayan Hintliler<\/p>\n

LGMD Alt Tipi<\/strong> (biliniyorsa): LGMD 2B\/R2 Dysferlin ile ili\u015fkili<\/p>\n

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

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

Bana 16 ya\u015f\u0131nda te\u015fhis konuldu. \u015eubat 2020'de genetik onay\u0131m\u0131 ald\u0131m.<\/p>\n

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

Aniden d\u00fc\u015fmek ve oturdu\u011fu yerden kalkmak ilk belirtilerdi.<\/p>\n

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

Hay\u0131r, aile \u00fcyelerimden hi\u00e7birinde LGMD yok. LGMD te\u015fhisi konulan 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

\u00c7evresel engeller ve tekerlekli sandalye eri\u015filebilirli\u011fi. Sahip oldu\u011fum yeteneklerin damgalanmad\u0131\u011f\u0131 istihdam f\u0131rsatlar\u0131. LGMD ile ilgilenen n\u00f6rolog eksikli\u011fi ve h\u0131zl\u0131 te\u015fhis yan\u0131t\u0131. LGMD'nin ilerlemesi ve hastal\u0131kla ili\u015fkili devam eden zorluklarla nas\u0131l ba\u015fa \u00e7\u0131k\u0131laca\u011f\u0131. G\u00fcnl\u00fck aktiviteler i\u00e7in yard\u0131mc\u0131 olabilecek ekipman t\u00fcrleri hakk\u0131nda \u00e7ok az veya hi\u00e7 rehberlik olmamas\u0131.<\/p>\n

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

BAE'de bir \u015firkette yeni bir i\u015fe ba\u015flad\u0131m ve beni de dahil etmek i\u00e7in eri\u015filebilir bir konaklama olarak evden \u00e7al\u0131\u015fmama izin verdiler. \u015eimdi Inclusive'de her g\u00fcn k\u00fcresel bir etki yaratmak ve bu d\u00fcnyay\u0131 \u00c7evrimi\u00e7i ve \u00c7evrimd\u0131\u015f\u0131 olarak daha eri\u015filebilir hale getirmek i\u00e7in \u00e7al\u0131\u015f\u0131yorum.<\/p>\n

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

Bana hayata dair yeni bir bak\u0131\u015f a\u00e7\u0131s\u0131 kazand\u0131rd\u0131 ve zaman\u0131ma ve mevcut yeteneklerime de\u011fer vermem gerekti\u011fini d\u00fc\u015f\u00fcnd\u00fcrd\u00fc.<\/p>\n

Fiziksel olarak her \u015feyi bir sonraki ki\u015fi gibi yapamayabilirim ama bu, hepimizin e\u015fit olarak payla\u015ft\u0131\u011f\u0131 d\u00fcnyada bir etki yaratmak i\u00e7in katk\u0131da bulunacak hi\u00e7bir \u015feyim olmad\u0131\u011f\u0131 anlam\u0131na gelmez.<\/p>\n

LGMD bana s\u00fcrekli destekleriyle aileme eskisinden daha fazla minnettar olmay\u0131 \u00f6\u011fretti.<\/p>\n

Her an\u0131 daha \u00e7ok ya\u015famam\u0131 ve sevmemi sa\u011flad\u0131.<\/p>\n

Dejeneratif bir hastal\u0131k oldu\u011fu i\u00e7in ilerliyor, bug\u00fcn yapabildi\u011fim \u015feyler \u00f6n\u00fcm\u00fczdeki y\u0131l yapabilece\u011fim \u015feyler olmayabilir. Bu y\u00fczden bug\u00fcn, \u015fu anda yapabildi\u011fim her fiziksel hareketin tad\u0131n\u0131 \u00e7\u0131karmaya \u00e7al\u0131\u015f\u0131yorum. Sa\u00e7\u0131m\u0131 taramaktan ba\u015flayarak kendime bir fincan \u00e7ay yapmaya kadar, buna de\u011fer veriyorum.<\/p>\n

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

D\u00fcnyan\u0131n bunun nadir g\u00f6r\u00fclen bir hastal\u0131k oldu\u011funu bilmesini istiyorum. Herkesin ba\u015f\u0131na gelebilir. Bunu okuyan siz olabilirsiniz ya da bu hastal\u0131kla ya\u015fayan tan\u0131mad\u0131\u011f\u0131n\u0131z biri olabilir. Ancak insanlar, tedavi edilmeyi bekleyen bu kas erimesi hastal\u0131\u011f\u0131yla ya\u015f\u0131yor. Size pandemiyi ve d\u00fcnyan\u0131n d\u00f6rt bir yan\u0131ndaki bilim insanlar\u0131n\u0131n bir a\u015f\u0131 bulmak i\u00e7in nas\u0131l yar\u0131\u015ft\u0131klar\u0131n\u0131 \u00f6rnek verebilirim. Oysa LGMD i\u00e7in ara\u015ft\u0131rmalar onlarca y\u0131ld\u0131r sonu\u00e7suz devam ediyor, fon eksikli\u011fi veya h\u00fck\u00fcmet deste\u011finin olmamas\u0131 bunun birka\u00e7 nedeni. Semptomlardan tan\u0131ya ve LGMD'yi kabul edip onunla ya\u015famaya ba\u015flad\u0131\u011f\u0131m g\u00fcne kadar yaln\u0131z bir yolculuk oldu. E\u015fimin, ailemin ve arkada\u015flar\u0131m\u0131n deste\u011fi bana her g\u00fcn cesaret veren bir \u015fey. Uzman eksikli\u011fi, bu konuda do\u011fru bilgi eksikli\u011fi her doktor ziyaretimde kar\u015f\u0131la\u015ft\u0131\u011f\u0131m bir \u015fey. Engellerin olmad\u0131\u011f\u0131 bir ortamda empatiye ihtiyac\u0131m\u0131z var. D\u00fcn y\u00fcr\u00fcyordum ama bug\u00fcn tekerlekli sandalyeye ihtiyac\u0131m var. \u0130nsanlar LGMD'yi bilirse durumumu hakl\u0131 \u00e7\u0131karmak daha kolay olacakt\u0131r.<\/p>\n

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

Yan\u0131tlad\u0131\u011f\u0131m soru varsay\u0131msald\u0131r. Bu soruyu sanki pratikmi\u015f gibi cevaplamay\u0131 ne kadar isterdim ve o g\u00fcn\u00fc pozitiflik ve umutla bekliyorum.<\/p>\n

O g\u00fcn belki \u00e7ok uzak, belki de \u00e7ok yak\u0131nda. Dini inanc\u0131mda oldu\u011fu gibi dizlerimin \u00fczerine \u00e7\u00f6k\u00fcp istedi\u011fim gibi dua etmeyi \u00e7ok isterdim. Dans etmeyi ve paten kaymay\u0131 \u00e7ok isterdim ki LGMD ile ya\u015fad\u0131\u011f\u0131m i\u00e7in art\u0131k bunlar\u0131 yapam\u0131yorum. Araba kullanmak istiyorum. Yeniden ba\u011f\u0131ms\u0131z olmay\u0131 arzuluyorum.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":3836,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[],"class_list":["post-3769","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD - Saira - 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\/2020\/12\/03\/individual-with-lgmd-saira\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" 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