{"id":1633,"date":"2017-11-06T10:00:14","date_gmt":"2017-11-06T16:00:14","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1633"},"modified":"2017-11-06T10:00:14","modified_gmt":"2017-11-06T16:00:14","slug":"fred","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2017\/11\/06\/fred\/","title":{"rendered":"OSOBA Z LGMD: Fred"},"content":{"rendered":"

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

Nazwa<\/strong>: Fred \u00a0\u00a0Wiek<\/strong>: 36 lat\"\"<\/a><\/p>\n

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

Podtyp LGMD<\/strong>: LGMD2A \/ kalpainopatia<\/p>\n

 <\/p>\n

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

Zdiagnozowano mnie w wieku 13 lat.<\/p>\n

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

Patrz\u0105c wstecz, zawsze by\u0142em nieco wolniejszy ni\u017c inne dzieci, ale nie mog\u0119 powiedzie\u0107, \u017ce by\u0142 jeden objaw, kt\u00f3ry zauwa\u017cyli moi rodzice lub ja. Zosta\u0142em zdiagnozowany przez przypadek. Pojecha\u0142em na narty z grup\u0105 ko\u015bcieln\u0105 i ostatecznie z\u0142ama\u0142em nog\u0119. Kiedy poszed\u0142em na szpitaln\u0105 izb\u0119 przyj\u0119\u0107 z powodu z\u0142amanej nogi, lekarz zauwa\u017cy\u0142, \u017ce nie jestem tak silny, jak powinienem by\u0107 w tym wieku. Doprowadzi\u0142o to do biopsji mi\u0119\u015bni. Pocz\u0105tkowo zdiagnozowano u mnie chorob\u0119 Beckera, wszystko to by\u0142o przed testami DNA.<\/p>\n

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

Nie, jestem jedyny.<\/p>\n

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

Najwi\u0119kszym wyzwaniem jest dla mnie niemo\u017cno\u015b\u0107 utrzymania mojego 7-miesi\u0119cznego dziecka bez pomocy. Nieustannie musz\u0119 broni\u0107 swojej racji w zwi\u0105zku z tym stanem. Nigdy nie zauwa\u017cy\u0142em, jak wiele os\u00f3b ma \"niepe\u0142nosprawne\" nastawienie. Ostatnim wyzwaniem jest dla mnie brak mo\u017cliwo\u015bci swobodnego odwiedzania przyjaci\u00f3\u0142 i rodziny.<\/p>\n

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

Mam tak wiele osi\u0105gni\u0119\u0107, ale gdybym m\u00f3g\u0142 wybra\u0107 tylko jedno, powiedzia\u0142bym, \u017ce uda\u0142o mi si\u0119 wyj\u015b\u0107 z SSI. Po diagnozie straci\u0142em nadziej\u0119, \u017ce kiedykolwiek b\u0119d\u0119 mia\u0142 prac\u0119, samoch\u00f3d, dom, w\u0142asn\u0105 rodzin\u0119 itp. Dzi\u015b jestem dyspozytorem policji stanowej, prowadz\u0119 samoch\u00f3d, mam pi\u0119kn\u0105 rodzin\u0119, obecnie chc\u0119 kupi\u0107 sw\u00f3j pierwszy dom i jestem optymist\u0105, \u017ce kiedy nadejdzie czas i nie b\u0119d\u0119 ju\u017c w stanie fizycznie wykonywa\u0107 pracy, kt\u00f3r\u0105 mam, B\u00f3g da mi kolejn\u0105 szans\u0119.<\/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><\/p>\n

LGMD nauczy\u0142o mnie, jak walczy\u0107 o to, czego chc\u0119. Nauczy\u0142o mnie, \u017ce nigdy nie jestem tak ograniczony, jak mog\u0142oby si\u0119 wydawa\u0107. Wszystko jest mo\u017cliwe.<\/p>\n

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

LGMD nie zosta\u0142o jeszcze wyleczone, ale z ich pomoc\u0105 mo\u017ce to nast\u0105pi\u0107.<\/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

Podnie\u015b\u0107 mojego synka, mocno go przytuli\u0107, podrzuci\u0107 w powietrze i z\u0142apa\u0107.<\/p>\n

 <\/p>\n

* * * Aby przeczyta\u0107 wi\u0119cej wywiad\u00f3w \"LGMD Spotlight Interviews\" lub zg\u0142osi\u0107 si\u0119 na ochotnika do udzia\u0142u w nadchodz\u0105cym wywiadzie, odwied\u017a nasz\u0105 stron\u0119 internetow\u0105 pod adresem https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/u><\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name:\u00a0 Fred \u00a0\u00a0Age: 36 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":1632,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-1633","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a-calpainopathy-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Fred - 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\/2017\/11\/06\/fred\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Fred - 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