{"id":1591,"date":"2017-09-27T13:12:40","date_gmt":"2017-09-27T18:12:40","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1591"},"modified":"2017-09-27T13:12:40","modified_gmt":"2017-09-27T18:12:40","slug":"becky","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2017\/09\/27\/becky\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Becky"},"content":{"rendered":"

LGMD \"Spotlight R\u00f6portaj\u0131\" \u00a0<\/strong><\/p>\n

\u0130sim<\/strong>: Becky \u00a0\u00a0Ya\u015f<\/strong>: 35 ya\u015f\u0131nda\"\"<\/a><\/p>\n

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

LGMD Alt Tipi<\/strong>: LGMD2B<\/p>\n

 <\/p>\n

KA\u00c7 YA\u015eINDA TE\u015eHIS KONULDU? <\/strong><\/p>\n

Bana 2009 y\u0131l\u0131nda, 27 ya\u015f\u0131ndayken te\u015fhis konuldu.<\/p>\n

\u0130LK BELIRTILERINIZ NEYDI? <\/strong><\/p>\n

\u0130lk belirtilerim basamaklar\u0131 \u00e7\u0131kmakta, yerden kalkmakta veya koltuktan\/tuvaletten kalkmakta zorlanmakt\u0131.<\/p>\n

LGMD HASTASI OLAN BA\u015eKA AILE \u00dcYELERINIZ VAR MI? <\/strong><\/p>\n

Ba\u015fka hi\u00e7bir aile \u00fcyesinde LGMD yok.<\/p>\n

LGMD I\u0307LE YA\u015eARKEN KAR\u015eILA\u015eTI\u011eINIZ EN B\u00dcY\u00dcK ZORLUKLARIN NELER OLDU\u011eUNU D\u00dc\u015e\u00dcN\u00dcYORSUNUZ: <\/strong><\/p>\n

Benim i\u00e7in en b\u00fcy\u00fck zorluk, s\u0131n\u0131rlar\u0131m\u0131 anlaman\u0131n zihinsel k\u0131sm\u0131. Hayat\u0131m\u0131n hi\u00e7 hayal etti\u011fim gibi olmad\u0131\u011f\u0131n\u0131 bilmek. S\u00fcrekli ilerleyen bu hastal\u0131kla ba\u015fa \u00e7\u0131kabilmek i\u00e7in e\u015fimin ve benim de\u011fi\u015ftirmek zorunda oldu\u011fumuz \u015feyleri bilmek.<\/p>\n

EN B\u00dcY\u00dcK BA\u015eARINIZ NEDIR? <\/strong><\/p>\n

Bu hastal\u0131k te\u015fhisi konulduktan sonraki en b\u00fcy\u00fck ba\u015far\u0131m\u0131n evlili\u011fim oldu\u011funu d\u00fc\u015f\u00fcn\u00fcyorum. Neyin yanl\u0131\u015f oldu\u011funu belirlemek i\u00e7in t\u00fcm testleri yapt\u0131rmaya ba\u015flamadan 2 ay \u00f6nce evlendik. Hastal\u0131kta ve sa\u011fl\u0131kta, hayal edebilece\u011fimizden \u00e7ok daha erken geldi, ancak bu sayede bug\u00fcn daha g\u00fc\u00e7l\u00fcy\u00fcz.<\/p>\n

LGMD BUG\u00dcN OLDU\u011eUNUZ KI\u015eI OLMANIZDA SIZI NASIL ETKILEDI? <\/strong><\/p>\n

Bu hastal\u0131k hayat\u0131m\u0131 de\u011fi\u015ftiriyor. Aileme ve arkada\u015flar\u0131ma ne kadar ba\u011f\u0131ml\u0131 olsam da hala olduk\u00e7a ba\u011f\u0131ms\u0131z\u0131m. El kumandalar\u0131yla araba kullan\u0131yorum, kendim i\u00e7in bir \u015feyler yapmaya devam etmek i\u00e7in buldu\u011fum yollarda becerikliyim ve bir bak\u0131ma kaslar\u0131m daha zay\u0131f olsa da daha g\u00fc\u00e7l\u00fcy\u00fcm. Bu bir anda olmad\u0131. Kaslar\u0131m zay\u0131f olsa da g\u00fc\u00e7l\u00fc bir insan oldu\u011fumu fark etmem zaman ald\u0131.<\/p>\n

D\u00dcNYANIN LGMD HAKKINDA NE BI\u0307LMESI\u0307NI\u0307 I\u0307STI\u0307YORSUNUZ? <\/strong><\/p>\n

D\u00fcnyan\u0131n bu hastal\u0131\u011f\u0131n ne kadar zorlu oldu\u011funu bilmesini ve anlamas\u0131n\u0131 istiyorum. Bazen beynim bir \u015feyi yapamayaca\u011f\u0131m\u0131 hat\u0131rlam\u0131yor ve tam yapmaya ba\u015flayaca\u011f\u0131m ki yapamayaca\u011f\u0131m\u0131 fark ediyorum. LGMD'li birinin uyand\u0131\u011f\u0131 andan itibaren g\u00fcn\u00fcn \u00fcstesinden nas\u0131l gelece\u011fini d\u00fc\u015f\u00fcnmek zorunda oldu\u011funu bilmelerini istiyorum. D\u00fcnya bilmeli ki bu hastal\u0131k g\u00f6r\u00fcnmez olsa da ger\u00e7ektir ve ba\u015fa \u00e7\u0131kmas\u0131 son derece zordur. Bir ki\u015finin bu hastal\u0131kla d\u0131\u015far\u0131da olmas\u0131, onun iyi oldu\u011fu ya da iyile\u015fti\u011fi anlam\u0131na gelmez. G\u00fcl\u00fcmsememizin ard\u0131nda bitkin veya ac\u0131 \u00e7ekiyor olsak bile hayatlar\u0131m\u0131z\u0131 ya\u015famaya devam etmeliyiz. D\u00fcnya \u015funu da bilmeli: B\u0130R TEDAV\u0130 BULUNACAK. Bu konuda \u00e7al\u0131\u015fan \u00e7ok say\u0131da insan var ve bana te\u015fhis konuldu\u011fu birka\u00e7 y\u0131l i\u00e7inde at\u0131lan ad\u0131mlar \u00e7ok b\u00fcy\u00fck.<\/p>\n

LGMD HASTALI\u011eINIZ YARIN \"TEDAVI\u0307\" EDI\u0307LEBI\u0307LECEK OLSA, YAPMAK I\u0307STEYECE\u011eI\u0307NI\u0307Z I\u0307LK \u015eEY NE OLURDU? <\/strong><\/p>\n

Bu liste uzun.... ama \u00f6nce ko\u015fard\u0131m. Bacaklar\u0131m uzun zamand\u0131r bu \u015fekilde hareket etmemi\u015fti.<\/p>\n

 <\/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 \u201cSpotlight Interview\u201d \u00a0 Name: Becky \u00a0\u00a0Age:\u00a0 35 yrs. old […]<\/p>","protected":false},"author":1,"featured_media":1590,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[87],"class_list":["post-1591","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2b-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Becky - 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\/09\/27\/becky\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Becky - 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