{"id":2361,"date":"2019-01-15T10:00:27","date_gmt":"2019-01-15T16:00:27","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2361"},"modified":"2019-01-15T10:00:27","modified_gmt":"2019-01-15T16:00:27","slug":"individual-with-lgmd-andrea","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2019\/01\/15\/individual-with-lgmd-andrea\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Andrea"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

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

\u0130sim<\/strong>: Andrea  Ya\u015f<\/strong>: 24 yrs. old<\/p>\n\n\n\n

\u00dclke<\/strong>: Birle\u015fik Devletler<\/p>\n\n\n\n

LGMD Alt Tipi<\/strong>: LGMD2A - bir t\u00fcr Kalpainopati <\/p>\n\n\n\n

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

Bana 11 ya\u015f\u0131mda te\u015fhis konuldu.<\/p>\n\n\n\n

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

8 ya\u015f\u0131ndayken topuklar\u0131m yere de\u011fmeden duramazd\u0131m ve\nk\u0131sa bir s\u00fcre sonra parmak ucunda y\u00fcr\u00fcmeye ba\u015flad\u0131m. Omuzlar\u0131mda ve kal\u00e7alar\u0131mda g\u00fc\u00e7s\u00fczl\u00fck\ntakip ettim.<\/p>\n\n\n\n

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

Hay\u0131r, LGMD te\u015fhisi konulan tek aile \u00fcyesi benim.<\/p>\n\n\n\n

En b\u00fcy\u00fck zorluklar olarak neleri g\u00f6r\u00fcyorsunuz?\nLGMD ile ya\u015famda<\/strong>:<\/p>\n\n\n\n

Uber kullanamamak!<\/p>\n\n\n\n

Hastal\u0131\u011f\u0131n ilerleyici do\u011fas\u0131 zorlay\u0131c\u0131d\u0131r. Ben de\nzaman i\u00e7inde baz\u0131 yeteneklerini kaybetmeye al\u0131\u015fmak zorunda kald\u0131 ve bu zor\nBu kay\u0131plar\u0131n devam edece\u011fini bilerek. \u00d6rne\u011fin ben \u00e7ocukken y\u00fcr\u00fcyebiliyordum,\nGen\u00e7lik y\u0131llar\u0131mda etrafta dola\u015fmak i\u00e7in bir Segway kulland\u0131m ve \u015fimdi bir\nTekerlekli sandalye. Benim i\u00e7in en zor ayarlamalar art\u0131k\narkada\u015flar\u0131n\u0131n evlerini ziyaret edebiliyor \u00e7\u00fcnk\u00fc neredeyse her zaman merdivenleri var ve\nBir zamanlar keyif ald\u0131\u011f\u0131m m\u00fczik aletlerini art\u0131k \u00e7alamayacak olmak.<\/p>\n\n\n\n

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

\u00dcniversitede tutkulu oldu\u011fum ve LGMD ile devam edebilece\u011fim bir \u00e7al\u0131\u015fma alan\u0131 buldu\u011fum i\u00e7in kendimi \u015fansl\u0131 hissediyorum. Biyoistatistik alan\u0131nda y\u00fcksek lisans yapmak i\u00e7in yeni bir eyalete ta\u015f\u0131nd\u0131\u011f\u0131m ve ba\u011f\u0131ms\u0131z ya\u015fad\u0131\u011f\u0131m i\u00e7in kendimle gurur duyuyorum. Ama Kurs<\/g> Yol boyunca birka\u00e7 ki\u015fi bana yard\u0131mc\u0131 oldu (seni seviyorum anne ve baba <\/g>:<\/g>).<\/p>\n\n\n\n

LGMD sizi nas\u0131l etkiledi?\nBug\u00fcn oldu\u011fun ki\u015fi:<\/strong><\/p>\n\n\n\n

Bazen hayat size de\u011fi\u015ftiremeyece\u011finiz zorluklar ya\u015fat\u0131r,\nAncak bu zorluklarla ba\u015fa \u00e7\u0131kma s\u00fcreci \u00e7o\u011fu zaman \u00e7ok \u00f6d\u00fcllendirici olabiliyor.\nLGMD ile ya\u015famak, fiziksel zorluklara ra\u011fmen beni bir\u00e7ok y\u00f6nden daha g\u00fc\u00e7l\u00fc bir insan yapt\u0131.\nzay\u0131fl\u0131k. Ayn\u0131 zamanda bana savunmas\u0131zl\u0131\u011f\u0131n ve kucaklaman\u0131n de\u011ferini \u00f6\u011fretti.\nne\u015feyi tam olarak ya\u015famak i\u00e7in \u00fcz\u00fcnt\u00fc. Asl\u0131nda belki de \"Ters Y\u00fcz\" filmi \u00f6\u011fretmi\u015ftir.\nBana...<\/p>\n\n\n\n

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

Stella Young'\u0131n TED Konu\u015fmas\u0131n\u0131 herkes izlemeli \"Ben\nilham kayna\u011f\u0131n\u0131z de\u011fil, \u00e7ok te\u015fekk\u00fcr ederim.\" \u015eu konuda harika bir mesaj payla\u015f\u0131yor\nengelli ki\u015filerin istismar edilmesine kar\u015f\u0131d\u0131r. \u0130nan\u0131yorum ki b\u00fcy\u00fck \u00e7o\u011funluk\nBu d\u00fcnyadaki hepimiz, ya\u015fad\u0131\u011f\u0131m\u0131z \u00e7e\u015fitli travmalara ra\u011fmen elimizden gelenin en iyisini yap\u0131yoruz.\nkatland\u0131k. Fiziksel engelleri olan bizler i\u00e7in bu travma sadece bir\n\u00e7\u0131plak g\u00f6zle biraz daha belirgin.<\/p>\n\n\n\n

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

Bu soru benim i\u00e7in en zor olan\u0131. Ben hi\u00e7\nko\u015fan, y\u00fcr\u00fcy\u00fc\u015f yapan ya da spor salonuna giden insanlar\u0131 ger\u00e7ekten k\u0131skand\u0131m. Ben\nmuhtemelen sadece okula gider ama asans\u00f6r yerine merdivenleri kullan\u0131r. Ama\nBu s\u0131k\u0131c\u0131 bir cevap. Belki daha dramatik olabilirim; tekerlekli sandalyemi satabilirim.\nve paray\u0131 ailemi Avrupa'ya g\u00f6t\u00fcrmek i\u00e7in kullanaca\u011f\u0131m. Tuvaleti kullanabilmek\nheyecan verici olabilir. Ama u\u00e7akla gelen \u00f6zel muameleyi \u00f6zlerdim.\ntekerlekli sandalye kullanmakla. Farkl\u0131 olman\u0131n avantajlar\u0131 var.<\/p>\n\n\n\n

*** L\u00fctfen bu g\u00f6nderiyi BE\u011eEN\u0130N, YORUM YAPIN ve PAYLA\u015eIN\nLGMD fark\u0131ndal\u0131\u011f\u0131!<\/p>\n\n\n\n

*** Daha fazla \"LGMD Spotlight R\u00f6portaj\u0131\" okumak veya gelecek bir r\u00f6portajda yer almak i\u00e7in g\u00f6n\u00fcll\u00fc olmak i\u00e7in l\u00fctfen web sitemizi ziyaret edin https:\/\/www.lgmd-info.org\/spotlight-interviews <\/a><\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name:  Andrea  Age: 24 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":2360,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-2361","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a-calpainopathy-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Andrea - 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=\"http:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2019\/01\/15\/individual-with-lgmd-andrea\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Andrea - 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