{"id":3156,"date":"2019-11-21T20:23:42","date_gmt":"2019-11-22T02:23:42","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3156"},"modified":"2019-11-21T20:23:42","modified_gmt":"2019-11-22T02:23:42","slug":"patrick","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2019\/11\/21\/patrick\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Patrick"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

LGMD \"SPOT I\u015eI\u011eI R\u00d6PORTAJI\"<\/h2>\n\n\n\n

\u0130S\u0130M<\/strong>: Patrick   YA\u015e<\/strong>:\n46 ya\u015f\u0131nda<\/p>\n\n\n\n

\u00dcLKE<\/strong>: ABD<\/p>\n\n\n\n

LGMD Alt Tipi<\/strong>: LGMD 2E\/R4 B\u00e8ta-sarkoglikan ile ili\u015fkili<\/p>\n\n\n\n

Ka\u00e7 ya\u015f\u0131ndayken\nte\u015fhis edildi<\/strong>:<\/p>\n\n\n\n

12 ya\u015f\u0131ndayd\u0131m ve y\u0131l 1985'ti. Ba\u015flang\u0131\u00e7ta bana Becker Kas Hastal\u0131\u011f\u0131 te\u015fhisi kondu.\nDistrofi!<\/p>\n\n\n\n

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

\u0130lk belirtilerim beden e\u011fitimi dersinde ko\u015fmakta zorlanmak, nefes nefese t\u0131rmanmakt\u0131.\nMerdivenler, parmak u\u00e7lar\u0131nda y\u00fcr\u00fcmek ve ko\u015fmak.<\/p>\n\n\n\n

Ba\u015fka aileniz var m\u0131?\nLGMD'si olan \u00fcyeler: <\/strong><\/p>\n\n\n\n

N<\/strong>o, ailemde LGMD'li tek ki\u015fi benim.<\/p>\n\n\n\n

Ne buluyorsunuz?\nLGMD ile ya\u015faman\u0131n en b\u00fcy\u00fck zorluklar\u0131<\/strong>:<\/p>\n\n\n\n

En b\u00fcy\u00fck zorluklardan biri, bunun bilinciyle ya\u015famakt\u0131r.\ndurumun ilerleyici olmas\u0131 ve ne kadar s\u00fcre i\u015flev g\u00f6rece\u011fimi bilmemem ve\nyetenekler. \u00d6zellikle bu y\u00fczden her g\u00fcn\u00fcmden en iyi \u015fekilde yararlan\u0131yorum!<\/p>\n\n\n\n

En b\u00fcy\u00fck ba\u015far\u0131n\u0131z nedir?\nba\u015far\u0131<\/strong>:<\/p>\n\n\n\n

\u00c7ok var! Bunlar\u0131n ba\u015f\u0131nda e\u015fim Vanessa ile tan\u0131\u015fmam ve \u015fimdi 2 \u00e7ocuk b\u00fcy\u00fctmem geliyor.\nerkek \u00e7ocuklar\u0131n\u0131n yan\u0131 s\u0131ra son 25 y\u0131ld\u0131r tam zamanl\u0131 m\u00fczik \u00f6\u011fretmenli\u011fi yap\u0131yor.\nOrtaokul.<\/p>\n\n\n\n

LGMD sizi nas\u0131l etkiledi?\nBug\u00fcn oldu\u011funuz ki\u015fi olman\u0131z i\u00e7in:<\/strong><\/p>\n\n\n\n

Bu bana hayat\u0131n de\u011ferli oldu\u011funu ve hepimizin kendimize zaman ay\u0131rmam\u0131z gerekti\u011fini g\u00f6sterdi.\nnefes al\u0131n ve t\u00fcm insanlarda ve t\u00fcm ili\u015fkilerimizde en iyiyi aray\u0131n. I\nsabretmeyi ve k\u00fc\u00e7\u00fck \u015feylerle u\u011fra\u015fmamay\u0131 \u00f6\u011frendim. Her sorun\nele al\u0131nm\u0131\u015f ve birlikte \u00e7al\u0131\u015fan insanlarla daha iyi hale getirilmi\u015ftir!<\/p>\n\n\n\n

D\u00fcnyan\u0131n ne yapmas\u0131n\u0131 istiyorsun?\nLGMD hakk\u0131nda bilinmesi gerekenler<\/strong>:<\/p>\n\n\n\n

LGMD ve herhangi bir kronik hastal\u0131\u011f\u0131 olan ki\u015filerin iyi ve k\u00f6t\u00fc g\u00fcnleri vard\u0131r, sadece\nherkes gibi mutlu ve tatmin edici bir ya\u015fam s\u00fcrd\u00fc\u011f\u00fcm\u00fcz\u00fc d\u00fc\u015f\u00fcn\u00fcyoruz. Bizler\npozitif olun ve \u00e7ok \u00e7al\u0131\u015f\u0131n.<\/p>\n\n\n\n

LGMD'niz \"tedavi edilebilir\" olsayd\u0131\nyar\u0131n, yapmak isteyece\u011finiz ilk \u015fey ne olurdu?<\/strong>:<\/p>\n\n\n\n

Ben \u00f6z\u00fcnde bir perk\u00fcsyoncu ve davulcuyum. Y\u0131llar ge\u00e7tik\u00e7e \u00e7alma yetene\u011fimi b\u00fcy\u00fck \u00f6l\u00e7\u00fcde kaybettim. \u0130yile\u015fti\u011fimde, bir gruba kat\u0131laca\u011f\u0131m ve gen\u00e7li\u011fimde yapt\u0131\u011f\u0131m gibi rock yapaca\u011f\u0131m! Ha-ha! Hepinize esenlikler.<\/p>","protected":false},"excerpt":{"rendered":"

LGMD “SPOTLIGHT INTERVIEW” NAME: Patrick   AGE: 46 yrs. old COUNTRY: […]<\/p>","protected":false},"author":1,"featured_media":3157,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,62],"tags":[],"class_list":["post-3156","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2e"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Patrick - 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\/2019\/11\/21\/patrick\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Patrick - LGMD Awareness Foundation\" \/>\n<meta property=\"og:description\" content=\"LGMD “SPOTLIGHT INTERVIEW” NAME: Patrick   AGE: 46 yrs. old COUNTRY: […]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2019\/11\/21\/patrick\/\" \/>\n<meta property=\"og:site_name\" content=\"LGMD Awareness Foundation\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/LGMDawareness\/\" \/>\n<meta property=\"article:published_time\" content=\"2019-11-22T02:23:42+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/06\/LGMD-Logo_1200X630.png\" \/>\n\t<meta property=\"og:image:width\" content=\"1200\" \/>\n\t<meta property=\"og:image:height\" content=\"630\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"dooley\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@LgmdAwareness\" \/>\n<meta name=\"twitter:site\" content=\"@LgmdAwareness\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"dooley\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2019\/11\/21\/patrick\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2019\/11\/21\/patrick\/\"},\"author\":{\"name\":\"dooley\",\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#\/schema\/person\/007755074875959ad5503c1c969678c7\"},\"headline\":\"INDIVIDUAL WITH LGMD: Patrick\",\"datePublished\":\"2019-11-22T02:23:42+00:00\",\"dateModified\":\"2019-11-22T02:23:42+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2019\/11\/21\/patrick\/\"},\"wordCount\":338,\"publisher\":{\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#organization\"},\"image\":{\"@id\":\"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2019\/11\/21\/patrick\/#primaryimage\"},\"thumbnailUrl\":\"\",\"articleSection\":[\"Individuals with LGMD - 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