{"id":544,"date":"2015-04-03T14:49:59","date_gmt":"2015-04-03T19:49:59","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=544"},"modified":"2015-04-03T14:49:59","modified_gmt":"2015-04-03T19:49:59","slug":"lacey","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2015\/04\/03\/lacey\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Lacey"},"content":{"rendered":"

04\/03\/2015<\/p>\n

\u0130S\u0130M<\/strong>: Lacey \u00a0\u00a0\u00a0YA\u015e<\/strong>:\u00a042\"LGMD2i<\/a><\/p>\n

\u00dcLKE<\/strong>: Birle\u015fik Devletler<\/p>\n

LGMD Alt Tipi<\/strong>: LGMD2i<\/p>\n

 <\/p>\n

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

Bana 16 ya\u015f\u0131nda Musk\u00fcler Distrofi ve 34 ya\u015f\u0131nda LGMD2i te\u015fhisi kondu. Her iki te\u015fhis de telefonda konuldu. Geriye d\u00f6n\u00fcp bakt\u0131\u011f\u0131mda, ke\u015fke doktorlar bana y\u00fcz y\u00fcze s\u00f6yleselerdi, \u00e7ok fazla sorum vard\u0131 ve korkmu\u015ftum.<\/p>\n

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

Fark etti\u011fim ilk belirtiler ko\u015farken bacaklar\u0131mda a\u011fr\u0131l\u0131 kramplar olu\u015fmas\u0131 ve di\u011fer \u00e7ocuklara ayak uyduramamakt\u0131. Bana tembel oldu\u011fum ve beden e\u011fitimi ve softbolda daha \u00e7ok \u00e7al\u0131\u015fmam gerekti\u011fi s\u00f6ylendi. \"Elimden geldi\u011fince \u00e7abal\u0131yorum, kendimi di\u011fer \u00e7ocuklar gibi nas\u0131l daha h\u0131zl\u0131 yapabilirim?\" diye d\u00fc\u015f\u00fcnd\u00fc\u011f\u00fcm\u00fc hat\u0131rl\u0131yorum.<\/p>\n

LGMD HASTASI OLAN BA\u015eKA AI\u0307LE \u00dcYELERI\u0307NI\u0307Z VAR MI?<\/strong>:<\/p>\n

Hay\u0131r, ailemde LGMD hastas\u0131 olan ba\u015fka kimse 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

S\u00fcrekli de\u011fi\u015fimler ve yeni normalime uyum sa\u011flaman\u0131n yollar\u0131n\u0131 bulmaya \u00e7al\u0131\u015fmak.<\/p>\n

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

En b\u00fcy\u00fck ba\u015far\u0131m, her g\u00fcn\u00fc \u015fefkat ve cesaretle ya\u015famak, destekleyici kocama e\u015f ve sevgi dolu k\u0131zlar\u0131m\u0131za anne olmakt\u0131r.<\/p>\n

LGMD BUG\u00dcN OLDU\u011eUNUZ KI\u0307\u015eI\u0307YE D\u00d6N\u00dc\u015eMENI\u0307ZDE SI\u0307ZI\u0307 NASIL ETKI\u0307LEDI\u0307?<\/strong>:<\/p>\n

LGMD beni yava\u015flamaya, mevcut olmaya ve fark\u0131nda olmaya zorlad\u0131. Bu hastal\u0131k sayesinde daha g\u00fc\u00e7l\u00fc, daha empatik bir insan oldum. Ayn\u0131 anda hem a\u011flamay\u0131 hem de g\u00fclmeyi \u00f6\u011frendim.<\/p>\n

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

D\u00fcnyan\u0131n, \u00f6zellikle de doktorlar\u0131n LGMD hakk\u0131nda daha fazla fark\u0131ndal\u0131\u011fa sahip olmas\u0131n\u0131 isterdim. Bir\u00e7o\u011fumuz i\u00e7in tan\u0131ya giden yolun uzun oldu\u011funu biliyorum ama \u00f6yle olmak zorunda de\u011fil. Baz\u0131 LGMD hastalar\u0131n\u0131n kardiyak ve pulmoner sorunlar\u0131 var ve bence bilgili doktorlar\u0131n izlemesi ve destek sa\u011flamas\u0131 \u00e7ok \u00f6nemli.<\/p>\n

LGMD HASTALI\u011eINIZ YARIN \"TEDAVI\u0307\" EDI\u0307LEBI\u0307LECEK OLSA, YAPMAK I\u0307STEYECE\u011eI\u0307NI\u0307Z I\u0307LK \u015eEY NE OLURDU<\/strong>: Yapmak isteyece\u011fim ilk \u015fey ko\u015fmak olurdu - ke\u015fke nas\u0131l bir his oldu\u011funu hat\u0131rlayabilseydim. Bazen scooter'\u0131m\u0131 s\u00fcrerken g\u00f6zlerimi kapat\u0131yorum ve ko\u015fuyormu\u015f gibi yap\u0131yorum - bu biraz tehlikeli oluyor \ud83d\ude42<\/p>","protected":false},"excerpt":{"rendered":"

04\/03\/2015 NAME: \u00a0Lacey \u00a0\u00a0\u00a0AGE:\u00a042 COUNTRY:\u00a0United States LGMD Sub-Type:\u00a0LGMD2i   AT […]<\/p>","protected":false},"author":1,"featured_media":542,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,35],"tags":[36,16],"class_list":["post-544","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2i","tag-lgmd2i","tag-united-states"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Lacey<\/title>\n<meta name=\"description\" content=\"Lacey, who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares her experience in living with this progressive neuro-muscular disease.\" \/>\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\/2015\/04\/03\/lacey\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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