{"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\/pl\/individuals-with-lgmd-interviews\/2019\/11\/21\/patrick\/","title":{"rendered":"OSOBA Z LGMD: Patrick"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

LGMD \"WYWIAD W \u015aWIETLE REFLEKTOR\u00d3W\"<\/h2>\n\n\n\n

NAZWA<\/strong>: Patrick   WIEK<\/strong>:\n46 lat<\/p>\n\n\n\n

KRAJ<\/strong>: USA<\/p>\n\n\n\n

Podtyp LGMD<\/strong>: LGMD 2E\/R4 Zwi\u0105zane z sarkoglikanem B\u00e8ta<\/p>\n\n\n\n

W jakim wieku zdiagnozowano u Ciebie\nzdiagnozowany<\/strong>:<\/p>\n\n\n\n

Mia\u0142em 12 lat i by\u0142 rok 1985. Pocz\u0105tkowo zdiagnozowano u mnie dystrofi\u0119 mi\u0119\u015bniow\u0105 Beckera!\nBeckera!<\/p>\n\n\n\n

Jakie by\u0142y pierwsze objawy?<\/strong>:\n<\/p>\n\n\n\n

Moimi pierwszymi objawami by\u0142y problemy z bieganiem na si\u0142owni, zadyszka podczas wchodzenia po schodach, chodzenie i bieganie na palcach.\npo schodach, chodzenie i bieganie na palcach.<\/p>\n\n\n\n

Czy masz innych cz\u0142onk\u00f3w rodziny\ncz\u0142onk\u00f3w, kt\u00f3rzy choruj\u0105 na LGMD: <\/strong><\/p>\n\n\n\n

N<\/strong>o, jestem jedyn\u0105 osob\u0105 w mojej rodzinie cierpi\u0105c\u0105 na LGMD.<\/p>\n\n\n\n

Jakie s\u0105 wed\u0142ug Ciebie\nnajwi\u0119ksze wyzwania w \u017cyciu z LGMD<\/strong>:<\/p>\n\n\n\n

Jednym z najwi\u0119kszych wyzwa\u0144 jest \u017cycie ze \u015bwiadomo\u015bci\u0105, \u017ce ten stan\nstan jest post\u0119puj\u0105cy i nie wiem, jak d\u0142ugo b\u0119d\u0119 mie\u0107 sprawno\u015b\u0107 i umiej\u0119tno\u015bci.\numiej\u0119tno\u015bci. Z tego powodu staram si\u0119 jak najlepiej wykorzysta\u0107 ka\u017cdy dzie\u0144!<\/p>\n\n\n\n

Jakie jest twoje najwi\u0119ksze\nosi\u0105gni\u0119cie<\/strong>:<\/p>\n\n\n\n

Mam ich wiele! Najwa\u017cniejszym z nich jest poznanie mojej \u017cony Vanessy, a teraz wychowywanie 2\nch\u0142opc\u00f3w, a tak\u017ce bycie pe\u0142noetatowym nauczycielem muzyki przez ostatnie 25 lat w\ngimnazjum.<\/p>\n\n\n\n

Jak LGMD wp\u0142yn\u0119\u0142o na to\nna stanie si\u0119 osob\u0105, kt\u00f3r\u0105 jeste\u015b dzisiaj:<\/strong><\/p>\n\n\n\n

To pokaza\u0142o mi, \u017ce \u017cycie jest cenne i wszyscy musimy po\u015bwi\u0119ci\u0107 czas na\noddycha\u0107 i szuka\u0107 tego, co najlepsze we wszystkich ludziach i wszystkich naszych relacjach. I\nnauczy\u0142em si\u0119 cierpliwo\u015bci i nie przejmowania si\u0119 drobiazgami. Ka\u017cdy problem mo\u017cna\nrozwi\u0105za\u0107 i poprawi\u0107 dzi\u0119ki wsp\u00f3\u0142pracy ludzi!<\/p>\n\n\n\n

Co chcia\u0142by\u015b, aby \u015bwiat\nwiedzia\u0142 o LGMD<\/strong>:<\/p>\n\n\n\n

\u017ce osoby z LGMD i ka\u017cd\u0105 inn\u0105 chorob\u0105 przewlek\u0142\u0105 maj\u0105 dobre i z\u0142e dni, tak jak wszyscy inni.\njak wszyscy inni, i \u017ce prowadzimy szcz\u0119\u015bliwe, satysfakcjonuj\u0105ce \u017cycie. Jeste\u015bmy\npozytywni i ci\u0119\u017cko pracujemy.<\/p>\n\n\n\n

Gdyby choroba LGMD mog\u0142a zosta\u0107 \"wyleczona\"\nJaka by\u0142aby pierwsza rzecz, kt\u00f3r\u0105 chcia\u0142by\u015b zrobi\u0107 jutro?<\/strong>:<\/p>\n\n\n\n

W g\u0142\u0119bi serca jestem perkusist\u0105 i b\u0119bniarzem. Z biegiem lat w wi\u0119kszo\u015bci straci\u0142em zdolno\u015b\u0107 do grania. Kiedy wyzdrowiej\u0119, do\u0142\u0105cz\u0119 do zespo\u0142u i b\u0119d\u0119 dawa\u0142 czadu, jak w m\u0142odo\u015bci! Ha-ha! Pok\u00f3j wam wszystkim.<\/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\/pl\/individuals-with-lgmd-interviews\/2019\/11\/21\/patrick\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\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\/pl\/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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