{"id":411,"date":"2015-01-30T21:57:44","date_gmt":"2015-01-31T03:57:44","guid":{"rendered":"http:\/\/mainstay-bg.com\/wp\/?p=136"},"modified":"2015-01-30T21:57:44","modified_gmt":"2015-01-31T03:57:44","slug":"136","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2015\/01\/30\/136\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Carol"},"content":{"rendered":"

01\/30\/2015\"c1\"<\/a><\/p>\n

ADI:<\/strong> Carol<\/p>\n

YA\u015e<\/strong>: 53<\/p>\n

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

LGMD Alt Tipi<\/strong>: LGMD 2A \/ Kalpainopati<\/p>\n

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

Bana 9 ya\u015f\u0131ndayken LGMD te\u015fhisi konuldu ancak 51 ya\u015f\u0131ma kadar LGMD2A'n\u0131n genetik onay\u0131n\u0131 alamad\u0131m.<\/p>\n

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

\u00c7ocukken ayak parmaklar\u0131m\u0131n \u00fczerinde y\u00fcr\u00fcme e\u011filimim vard\u0131. Dokuz ya\u015f\u0131ma geldi\u011fimde, kontrakt\u00fcrler nedeniyle ayakta dururken art\u0131k topuklar\u0131m\u0131 yere basam\u0131yordum. Bir t\u00fcr \"paytak\" y\u00fcr\u00fcy\u00fc\u015f geli\u015ftirmeye ba\u015flad\u0131m ve ayr\u0131ca ko\u015farken ve merdiven \u00e7\u0131karken zorluk ya\u015f\u0131yordum.<\/p>\n

BA\u015eKA AILE \u00dcYELERINIZ VAR MI?<\/b>GMD: <\/b><\/p>\n

Hay\u0131r, bildi\u011fimiz kadar\u0131yla bir tek ben var\u0131m.<\/p>\n

ILE YA\u015eAMANIN EN B\u00dcY\u00dcK ZORLUKLARI OLARAK NELERI G\u00d6R\u00dcYORSUNUZ? <\/b>LGMD<\/b>:<\/p>\n

Bu hastal\u0131\u011f\u0131n devam eden ilerlemesiyle s\u00fcrekli olarak ba\u015fa \u00e7\u0131kmak her zaman bir zorluktur. En b\u00fcy\u00fck zorluklardan biri de g\u00fcnl\u00fck ya\u015fam aktivitelerinin \u00e7o\u011funda ba\u015fkalar\u0131na ba\u011f\u0131ml\u0131 olmak. Giyinmek, tuvalete gitmek, y\u0131kanmak vs. i\u00e7in birinin yard\u0131m\u0131na ihtiyac\u0131m var. Ba\u011f\u0131ms\u0131zl\u0131\u011f\u0131n\u0131z\u0131 kaybetmek \u00e7ok zor!<\/p>\n

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

2000-2001 Chicago Rehabilitasyon Enstit\u00fcs\u00fc (RIC) \"Y\u0131l\u0131n Kad\u0131n Engelli Su Kayak\u00e7\u0131s\u0131\" se\u00e7ildim. Ancak d\u00fcr\u00fcst olmak gerekirse, en b\u00fcy\u00fck ba\u015far\u0131m LGMD te\u015fhisim nedeniyle g\u00fcnl\u00fck olarak kar\u015f\u0131la\u015ft\u0131\u011f\u0131m zorluklara ra\u011fmen \u00fcretken ve aktif bir ya\u015fam tarz\u0131 s\u00fcrd\u00fcrmektir. Kay\u0131tl\u0131 bir mesleki terapist (OTR) olarak 20 y\u0131l\u0131 a\u015fk\u0131n bir s\u00fcre \u00e7al\u0131\u015ft\u0131m, mutlu bir evlili\u011fim var ve kilisemde ve toplumda \u00e7ok yer al\u0131yorum.<\/p>\n

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

LGMD, fiziksel olarak daha zay\u0131f olmama neden olmas\u0131na ra\u011fmen beni bir insan olarak daha g\u00fc\u00e7l\u00fc k\u0131ld\u0131. LGMD ile ya\u015famak, herkesin hayat\u0131nda zorluklar oldu\u011fu ger\u00e7e\u011fini anlamama ve kabullenmeme yard\u0131mc\u0131 oldu. Ne yaz\u0131k ki, benim LGMD'm daha belirgin veya g\u00f6r\u00fcn\u00fcr... ancak bu ayn\u0131 zamanda hepimizin zorluklar\u0131 telafi etmekten daha fazlas\u0131n\u0131 yapan \u00f6zel yeteneklere veya niteliklere sahip oldu\u011fumuzu anlamama da yard\u0131mc\u0131 oldu. Yapamad\u0131\u011f\u0131m \u015feyler \u00fczerinde durmak yerine yapabildi\u011fim \u015feylere odaklanman\u0131n ve bunlar\u0131 takdir etmenin \u00f6nemini \u00f6\u011frendim. Bu ayn\u0131 zamanda hayat\u0131mdaki nimetleri bulmam\u0131 ve en k\u00fc\u00e7\u00fck hediyeleri bile takdir etmemi sa\u011flad\u0131. T\u00fcm bunlar sayesinde, hayatlar\u0131nda bir engelle veya zorlukla m\u00fccadele eden bir\u00e7ok ki\u015finin savunucusu ve rol modeli oldum... ve bu k\u0131smen LGMD'mden kaynaklan\u0131yor.<\/p>\n

D\u00dcNYANIN NEYI BILMESINI ISTERSINIZ?<\/b> LGMD<\/b>:<\/p>\n

\u015eu anda LGMD i\u00e7in herhangi bir tedavi ya da iyile\u015ftirme bulunmamaktad\u0131r. Bu nadir hastal\u0131\u011f\u0131n amans\u0131z do\u011fas\u0131 bizi zay\u0131flatmaya ve g\u00fc\u00e7s\u00fczle\u015ftirmeye devam ediyor.... daha fazla zay\u0131flaman\u0131n imkans\u0131z oldu\u011funu d\u00fc\u015f\u00fcnd\u00fc\u011f\u00fcn\u00fczde bile! Tarihsel olarak LGMD, di\u011fer kas distrofisi t\u00fcrlerine g\u00f6re \u00f6nemli \u00f6l\u00e7\u00fcde daha az ara\u015ft\u0131rma dolar\u0131 \u00e7ekmektedir ve bu nedenle hastal\u0131\u011f\u0131 anlamak ve bir tedavi ke\u015ffetmek i\u00e7in \u00e7al\u0131\u015fan daha az ara\u015ft\u0131rmac\u0131 vard\u0131r. Bu durum de\u011fi\u015fmek zorunda! LGMD'nin t\u00fcm formlar\u0131 i\u00e7in bir tedavi ve tedavi ke\u015ffetmeye yard\u0131mc\u0131 olmak i\u00e7in daha fazla fona ve daha fazla ara\u015ft\u0131rmaya ihtiyac\u0131m\u0131z var.<\/p>\n

LGMD HASTALI\u011eINIZ YARIN \"TEDAVI\u0307\" EDI\u0307LEBI\u0307LECEK OLSA, YAPMAK I\u0307STEYECE\u011eI\u0307NI\u0307Z I\u0307LK \u015eEY NE OLURDU<\/b>: Kocam\u0131n yan\u0131na ko\u015fmak ve kollar\u0131m\u0131 ona s\u0131k\u0131ca sar\u0131p kocaman bir kucak vermek isterdim! Sonra da kumsalda ko\u015fmaya giderdim.<\/p>","protected":false},"excerpt":{"rendered":"

01\/30\/2015 NAME: Carol AGE: 53 COUNTRY: United States LGMD Sub-Type: […]<\/p>","protected":false},"author":1,"featured_media":254,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,16],"class_list":["post-411","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","tag-united-states"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Carol<\/title>\n<meta name=\"description\" content=\"Carol, 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\/01\/30\/136\/\" \/>\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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