{"id":416,"date":"2015-02-12T22:30:56","date_gmt":"2015-02-13T04:30:56","guid":{"rendered":"http:\/\/mainstay-bg.com\/wp\/?p=161"},"modified":"2015-02-12T22:30:56","modified_gmt":"2015-02-13T04:30:56","slug":"161","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2015\/02\/12\/161\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Lydia"},"content":{"rendered":"

02\/12\/2014:\"LGMD2B<\/a><\/p>\n

\u0130S\u0130M<\/strong>: Lydia<\/p>\n

Ya\u015f<\/strong>: 45<\/p>\n

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

LGMD ALT T\u0130P\u0130<\/strong>: LGMD2B \/ Miyoshi<\/p>\n

KA\u00c7 YA\u015eINDA TE\u015eHIS KONULDU?<\/strong> 41<\/p>\n

\u0130LK BELIRTILERINIZ NEYDI?<\/strong>
\n\u0130lk belirtilerim \u015funlard\u0131: dizlerin yerinden \u00e7\u0131kmas\u0131, bacak, ayak, g\u00f6\u011f\u00fcs, boyun ve kol a\u011fr\u0131s\u0131, d\u00fc\u015fme, uyu\u015fukluk, garip \u00f6rdek y\u00fcr\u00fcy\u00fc\u015f\u00fc.<\/p>\n

LGMD HASTASI OLAN BA\u015eKA AILE \u00dcYELERINIZ VAR MI?<\/strong>
\nHay\u0131r<\/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>
\nHastal\u0131\u011f\u0131n ilerleyici do\u011fas\u0131 korkutucudur. LGMD'nin neden oldu\u011fu uyu\u015fukluk da zay\u0131flat\u0131c\u0131. Duruma ek olarak, eri\u015filebilirlik eksikli\u011fini ve engelli insanlara y\u00f6nelik sosyal tutumlar\u0131 \u00e7ok s\u0131n\u0131rlay\u0131c\u0131 buluyorum.<\/p>\n

EN B\u00dcY\u00dcK BA\u015eARINIZ NEDIR?<\/strong>
\nBu zor bir i\u015f. \u00c7al\u0131\u015fmak, k\u00fc\u00e7\u00fck \u00e7ocuklara, demansl\u0131 bir anneye ve ya\u015fl\u0131 babama bakmak (karde\u015flerimin yard\u0131m\u0131yla birlikte) ve Sosyal Hizmet Lisans\u0131 almak. Geriye d\u00f6n\u00fcp bakt\u0131\u011f\u0131mda, t\u00fcm bunlar\u0131 yapabildi\u011fime hayret ediyorum.<\/p>\n

LGMD BUG\u00dcN OLDU\u011eUNUZ KI\u015eI OLMANIZDA SIZI NASIL ETKILEDI?<\/strong>
\nBa\u015fkalar\u0131na kar\u015f\u0131 empatimi art\u0131rd\u0131 ve engellilik bilincimi geli\u015ftirmemde itici g\u00fc\u00e7 oldu.<\/p>\n

D\u00dcNYANIN LGMD HAKKINDA NE BI\u0307LMESI\u0307NI\u0307 I\u0307STI\u0307YORSUNUZ?<\/strong>
\nBirincisi, bu durumdan haberdar olmalar\u0131. \u00c7o\u011fu t\u0131p uzman\u0131 bile bu durumdan habersizdir.<\/p>\n

\u0130kinci olarak, ilerleyici ve zay\u0131flat\u0131c\u0131d\u0131r.<\/p>\n

\u00dc\u00e7\u00fcnc\u00fcs\u00fc, bu hastal\u0131\u011fa sahip olan \u00e7o\u011fumuzun aksini tercih edece\u011fini s\u00f6yleyerek kendimi olduk\u00e7a g\u00fcvende hissediyorum, i\u015fte bu y\u00fczden ara\u015ft\u0131rma ve kamuoyu fark\u0131ndal\u0131\u011f\u0131 hayati \u00f6nem ta\u015f\u0131yor.<\/p>\n

D\u00f6rd\u00fcnc\u00fc olarak, bu da bir \u00f6rnek, ge\u00e7enlerde \u00e7evrimi\u00e7i gruplar\u0131m\u0131zdan birinde, benim durumumdaki insanlar iyile\u015ftikleri takdirde yapmak istedikleri be\u015f \u015feyi tart\u0131\u015f\u0131yorlard\u0131. \u00c7ocuklar\u0131n\u0131 kucaklamak ve sevdiklerine sar\u0131lmak gibi \u015feyler. Bu, LGMD'nin tehlikeli ger\u00e7ekli\u011fidir.<\/p>\n

LGMD HASTALI\u011eINIZ YARIN \"TEDAVI\u0307\" EDI\u0307LEBI\u0307LECEK OLSA, YAPMAK I\u0307STEYECE\u011eI\u0307NI\u0307Z I\u0307LK \u015eEY NE OLURDU?<\/strong>
\nAilemle birlikte ormanl\u0131k bir alanda y\u00fcr\u00fcy\u00fc\u015fe \u00e7\u0131kabilmeyi \u00e7ok isterdim.<\/p>","protected":false},"excerpt":{"rendered":"

02\/12\/2014: NAME: Lydia Age: 45 COUNTRY: United States LGMD SUB-TYPE: […]<\/p>","protected":false},"author":1,"featured_media":162,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[23,25,16],"class_list":["post-416","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2b","tag-miyoshi","tag-united-states"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Lydia<\/title>\n<meta name=\"description\" content=\"Lydia, 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=\"http:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2015\/02\/12\/161\/\" \/>\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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