{"id":1403,"date":"2017-01-28T09:30:12","date_gmt":"2017-01-28T15:30:12","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1403"},"modified":"2017-01-28T09:30:12","modified_gmt":"2017-01-28T15:30:12","slug":"brenda","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2017\/01\/28\/brenda\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Brenda"},"content":{"rendered":"

LGMD \"Spotlight R\u00f6portaj\u0131\"<\/p>\n

\u0130sim<\/strong>: Brenda\u00a0 Ya\u015f<\/strong>: 55 ya\u015f\u0131nda\"\"<\/a><\/p>\n

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

LGMD Alt Tipi<\/strong>: LGMD2A - Calpainopathy olarak da bilinir<\/p>\n

 <\/p>\n

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

Bana 50 ya\u015f\u0131ndayken te\u015fhis konuldu.<\/p>\n

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

\u0130lk belirtilerim \u015funlard\u0131: d\u00fc\u015fme, bilek d\u00fc\u015fmesi, kal\u00e7alar\u0131m \u00f6nde y\u00fcr\u00fcrken al\u0131\u015f\u0131lmad\u0131k bir y\u00fcr\u00fcy\u00fc\u015f, bacak kramplar\u0131 ve h\u0131zl\u0131 kilo kayb\u0131.<\/p>\n

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

Ba\u015fka hi\u00e7bir aile \u00fcyesinde 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

LGMD ile ya\u015faman\u0131n en b\u00fcy\u00fck zorlu\u011fu normal g\u00f6r\u00fcnmem ve hastal\u0131\u011f\u0131n sonsuza kadar s\u00fcrmesi.<\/p>\n

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

En b\u00fcy\u00fck ba\u015far\u0131lar\u0131mdan baz\u0131lar\u0131 \u015funlard\u0131r: Alplerde kayak yapmak, Atlantik k\u0131y\u0131s\u0131nda deniz kanosu yapmak, Champlain G\u00f6l\u00fc'nde deniz kanosu yapmak ve Vermont Eyaleti'nde paten kaymak. Buna ek olarak, 17 ya\u015f\u0131nda sa\u011fl\u0131kl\u0131 bir k\u0131z \u00e7ocu\u011fu yeti\u015ftirmek ve ne olursa olsun beni \u00e7ok seven ola\u011fan\u00fcst\u00fc bir kocayla 25 y\u0131ld\u0131r evli olmak! Ayr\u0131ca 22 y\u0131ld\u0131r Vermont'un tek 5 Y\u0131ld\u0131zl\u0131 Tatil K\u00f6y\u00fc'nde Rekreasyon Direkt\u00f6r\u00fc olarak \u00e7al\u0131\u015f\u0131yorum.<\/p>\n

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

Olumlu bir tutumum var ve ne olursa olsun sa\u011fl\u0131kl\u0131 ve mutlu kal\u0131yorum.<\/p>\n

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

Herkese hala her f\u0131rsatta dans eden, Martha's Vineyard'daki Gay Head Kayal\u0131klar\u0131'n\u0131n kumsal\u0131nda taklalar atan ve ters d\u00f6n\u00fc\u015fler yapan ayn\u0131 Brenda oldu\u011fumu s\u00f6ylemek istiyorum. Su kayaklar\u0131yla slalom yapan ilk ki\u015fi, yoku\u015f a\u015fa\u011f\u0131, kros ve telemark kaya\u011f\u0131 yapan ilk ki\u015fi ve Avrupa'da Alplerde kayak yapan ilk ki\u015fi. Washington Da\u011f\u0131'ndaki Tuckerman's Ravine'de ilk kayan ki\u015fi. Vermont'taki Killington kayak merkezindeki t\u00fcm siyah ve \u00e7ift siyah elmas parkurlarda, t\u00fcm orman parkurlar\u0131 da dahil olmak \u00fczere 30 y\u0131l boyunca kayak yapan ki\u015fi. Bu hastal\u0131\u011f\u0131n beni etiketlemesine ya da yatalak bir duruma getirmesine asla izin vermeyece\u011fim. Dr. Anthony Amato, 50 ya\u015f\u0131nda te\u015fhis kondu\u011funda \"\u0130yi ve Uzun Ya\u015fam\" dedi. D\u00fcnyan\u0131n engelli birinin de sizin gibi oldu\u011funu bilmesini istiyorum!<\/p>\n

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

Kocamla yorulmadan dans etmek. M\u00fckemmel d\u00f6n\u00fc\u015flerle tozlu parkurlarda kayak yapmak. Kumlu bir plajda yorulmadan y\u00fcr\u00fcmek. Eklem a\u011fr\u0131s\u0131 veya bilek d\u00fc\u015fmesi olmadan tekrar iyi bir tempoda y\u00fcr\u00fcy\u00fc\u015f yapmak. Bayanlarla bisiklet s\u00fcrmek ve onlara ayak uydurabilmek. Karda ya\u011f lasti\u011fi bisikleti.<\/p>\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 “Spotlight Interview” Name:\u00a0 Brenda\u00a0 Age:\u00a0 55 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":1404,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-1403","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: Brenda - 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\/2017\/01\/28\/brenda\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Brenda - 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