{"id":419,"date":"2015-03-12T21:50:04","date_gmt":"2015-03-13T02:50:04","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=312"},"modified":"2015-03-12T21:50:04","modified_gmt":"2015-03-13T02:50:04","slug":"donavon","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/","title":{"rendered":"OSOBA Z LGMD: Donavon"},"content":{"rendered":"

03\/12\/2015:<\/p>\n

Nazwa<\/strong>: Donavon\u00a0 Wiek<\/strong>: 52\"LGMD2D<\/a><\/p>\n

Kraj<\/strong>: Stany Zjednoczone<\/p>\n

Podtyp LGMD<\/strong>: LGMD2D<\/p>\n

W jakim wieku zosta\u0142e\u015b zdiagnozowany?<\/strong>:<\/p>\n

Zdiagnozowano mnie w wieku 16 lat<\/p>\n

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

Nigdy nie by\u0142em w stanie szybko biega\u0107 i mia\u0142em problemy z wchodzeniem po schodach. Przez pewien czas mieszkali\u015bmy na farmie i kiedy przychodzi\u0142o do wykonywania obowi\u0105zk\u00f3w, nie by\u0142em w stanie podnie\u015b\u0107 pe\u0142nego worka paszy.<\/p>\n

Czy masz innych cz\u0142onk\u00f3w rodziny cierpi\u0105cych na LGMD?<\/strong><\/p>\n

Tak, mam cztery siostry i dwie siostrzenice z LGMD.<\/p>\n

Co uwa\u017casz za najwi\u0119ksze wyzwanie w \u017cyciu z LGMD?<\/strong>:<\/p>\n

Ca\u0142a pomoc, kt\u00f3rej potrzebowa\u0142em przez lata, a z ka\u017cdym rokiem jest jej coraz wi\u0119cej. Jestem bardzo wdzi\u0119czny mojej wspania\u0142ej \u017conie i wspania\u0142ym przyjacio\u0142om, kt\u00f3rzy pomagali mi przez lata. Moja siostra Monica zmar\u0142a w 2012 roku z powodu powik\u0142a\u0144 LGMD, wi\u0119c mam to z ty\u0142u g\u0142owy, wiedz\u0105c, \u017ce jestem coraz s\u0142abszy.<\/p>\n

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

Bycie pierwsz\u0105 osob\u0105, u kt\u00f3rej przeprowadzono terapi\u0119 genow\u0105 dystrofii mi\u0119\u015bniowej. Dzwoni\u0142em do lekarza co miesi\u0105c po tym, jak zidentyfikowano m\u00f3j defekt genu, a kiedy rozpocz\u0119to pierwsz\u0105 pr\u00f3b\u0119, zg\u0142osi\u0142em si\u0119 na ochotnika. Terapia genowa otworzy\u0142a przede mn\u0105 wiele mo\u017cliwo\u015bci, poniewa\u017c zeznawa\u0142em w Senacie Stan\u00f3w Zjednoczonych. Pomog\u0142em lobbowa\u0107 pierwsz\u0105 ustaw\u0119 MD Care Act w Waszyngtonie. Przez sze\u015b\u0107 lat zasiada\u0142em r\u00f3wnie\u017c w komisji nadzorczej w Narodowym Instytucie Zdrowia.<\/p>\n

Jak LGMD wp\u0142yn\u0119\u0142o na to, \u017ce sta\u0142e\u015b si\u0119 osob\u0105, kt\u00f3r\u0105 jeste\u015b dzisiaj?<\/strong>:<\/strong><\/p>\n

Ze wzgl\u0119du na moj\u0105 LGMD my\u015bl\u0119, \u017ce musia\u0142em ci\u0119\u017cej walczy\u0107 o prac\u0119... niekt\u00f3rzy ludzie s\u0142ysz\u0105, \u017ce mam dystrofi\u0119 mi\u0119\u015bniow\u0105 lub widz\u0105 mnie na w\u00f3zku inwalidzkim i my\u015bl\u0105, \u017ce nie jestem w stanie nic zrobi\u0107. W rezultacie rozwin\u0105\u0142em bardzo zdeterminowane i optymistyczne podej\u015bcie w wielu aspektach mojego \u017cycia. Inaczej patrz\u0119 na inne osoby niepe\u0142nosprawne, poniewa\u017c wiem, z jakimi trudno\u015bciami zmagaj\u0105 si\u0119 na co dzie\u0144. Jestem wdzi\u0119czny, \u017ce jestem chrze\u015bcijaninem, poniewa\u017c pewnego dnia, je\u015bli nie b\u0119dzie lekarstwa za mojego \u017cycia, w niebie nie b\u0119dzie \u017cadnych chor\u00f3b.<\/p>\n

Co chcia\u0142by\u015b, aby \u015bwiat dowiedzia\u0142 si\u0119 o LGMD?<\/strong>:<\/p>\n

Wierz\u0119, \u017ce jeste\u015bmy bardzo blisko znalezienia terapii lub lekarstwa. Bra\u0142em udzia\u0142 w pierwszej pr\u00f3bie terapii genowej w 1999 roku i jestem bardzo podekscytowany rozpocz\u0119ciem kolejnej pr\u00f3by terapii genowej, w kt\u00f3rej do dostarczenia nowego wektora wykorzystany zostanie uk\u0142ad krwiono\u015bny.<\/p>\n

Gdyby jutro mo\u017cna by\u0142o \"wyleczy\u0107\" chorob\u0119 LGMD, co by\u0142oby pierwsz\u0105 rzecz\u0105, kt\u00f3r\u0105 chcia\u0142by\u015b zrobi\u0107?<\/strong>:<\/p>\n

Jazda samochodem lub pickupem zamiast jazdy vanem. Pewnego dnia chcia\u0142bym mie\u0107 kolejnego Pontiaca GTO.<\/p>","protected":false},"excerpt":{"rendered":"

03\/12\/2015: Name: Donavon\u00a0 Age: 52 Country: United States LGMD Sub-Type: […]<\/p>","protected":false},"author":1,"featured_media":313,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,28],"tags":[29,16],"class_list":["post-419","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2d","tag-lgmd2d","tag-united-states"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Donavon<\/title>\n<meta name=\"description\" content=\"Donavon, who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares his 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\/pl\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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