{"id":990,"date":"2015-08-18T11:15:27","date_gmt":"2015-08-18T16:15:27","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=990"},"modified":"2015-08-18T11:15:27","modified_gmt":"2015-08-18T16:15:27","slug":"martin","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2015\/08\/18\/martin\/","title":{"rendered":"OSOBA Z LGMD: Martin"},"content":{"rendered":"

08\/18\/2015<\/strong><\/p>\n

Nazwa<\/strong>: Martin \u00a0WIEK<\/strong>: 42 lata\"LGMD2A<\/a><\/p>\n

Kraj<\/strong>: Wielka Brytania<\/p>\n

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

 <\/p>\n

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

Zdiagnozowano mnie, gdy mia\u0142em 23 lata.<\/p>\n

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

Mia\u0142em upadek w gara\u017cu, zwichn\u0105\u0142em kolano, kt\u00f3re nie naprawi\u0142o si\u0119 w oczekiwanym czasie.<\/p>\n

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

Tak, m\u00f3j starszy brat r\u00f3wnie\u017c cierpi na LGMD.<\/p>\n

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

Moim najwi\u0119kszym wyzwaniem jest wchodzenie po schodach i pr\u00f3ba przekonania ludzi, by zrozumieli, jak trudno jest by\u0107 osob\u0105 niepe\u0142nosprawn\u0105 poruszaj\u0105c\u0105 si\u0119 na w\u00f3zku, kt\u00f3ra jest zdeterminowana, by pozosta\u0107 na nogach tak d\u0142ugo, jak to mo\u017cliwe. (i troch\u0119 si\u0119 chwieje)<\/p>\n

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

Zda\u0142em sobie spraw\u0119, \u017ce mog\u0119 pisa\u0107 o dystrofii mi\u0119\u015bniowej, a ludzie te\u017c mnie s\u0142uchaj\u0105! Zacz\u0105\u0142em podnosi\u0107 \u015bwiadomo\u015b\u0107 i zbiera\u0107 fundusze na badania, ucz\u0119szcza\u0142em do parlamentu, u\u015bwiadamia\u0142em osobisto\u015bci sportu i telewizji o tych chorobach za po\u015brednictwem medi\u00f3w spo\u0142eczno\u015bciowych, zosta\u0142em doceniony i nagrodzony przez MDUK za wszystkie moje wysi\u0142ki na rzecz podnoszenia \u015bwiadomo\u015bci i funduszy na badania, zmieni\u0142em karier\u0119, aby m\u00f3c pomaga\u0107 innym, by\u0107 tat\u0105 trzech wspania\u0142ych dziewczynek, staraj\u0105c si\u0119 by\u0107 dobrym wzorem do na\u015bladowania i ca\u0142y czas pozostawa\u0107 pozytywnym.<\/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

Jak na ironi\u0119, my\u015bl\u0119, \u017ce LGMD uczyni\u0142o mnie silniejszym ni\u017c kiedykolwiek my\u015bla\u0142em, \u017ce b\u0119d\u0119. Jestem niezwykle zdeterminowany, aby poinformowa\u0107 wszystkich o tych schorzeniach i u\u0142atwi\u0107 \u017cycie wielu innym osobom w przysz\u0142o\u015bci.<\/p>\n

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

To, \u017ce istnieje, by\u0142oby dobrym pocz\u0105tkiem! Dopiero po mojej diagnozie i po latach, kiedy zacz\u0105\u0142em m\u00f3wi\u0107 o tym schorzeniu, dotar\u0142o do mnie, \u017ce moja rodzina, przyjaciele i spo\u0142ecze\u0144stwo w og\u00f3le nie s\u0142yszeli o \u017bADNYM typie lub odmianie dystrofii mi\u0119\u015bniowej i to musi si\u0119 zmieni\u0107; konieczne jest, aby ludzie wiedzieli o tych schorzeniach.<\/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

Biega\u0107 po pla\u017cy tak szybko, jak to tylko mo\u017cliwe (pomy\u015bl o filmie \"Rydwany ognia\" i \u015bcie\u017cce d\u017awi\u0119kowej Vangelisa!), a nast\u0119pnie przytuli\u0107 si\u0119 do wszystkich moich dziewczyn i \u017cony.<\/p>\n

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

08\/18\/2015 Name: Martin \u00a0AGE: 42 yrs. old Country: United Kingdom […]<\/p>","protected":false},"author":1,"featured_media":991,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,20],"class_list":["post-990","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","tag-united-kingdom"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Martin<\/title>\n<meta name=\"description\" content=\"Martin, 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\/08\/18\/martin\/\" \/>\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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