{"id":3464,"date":"2020-08-24T19:35:11","date_gmt":"2020-08-25T00:35:11","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3464"},"modified":"2024-02-09T14:24:34","modified_gmt":"2024-02-09T14:24:34","slug":"dylan","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2020\/08\/24\/dylan\/","title":{"rendered":"OSOBA Z LGMD: Dylan"},"content":{"rendered":"
\"\"<\/figure><\/div>\n\n\n\n

LGMD \"Wywiad w \u015bwietle reflektor\u00f3w\"<\/strong><\/p>\n\n\n\n

Nazwa<\/strong>: Dylan                                  Wiek<\/strong>28 lat<\/p>\n\n\n\n

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

Podtyp LGMD<\/strong>: LGMD 2J \/ R10 Zwi\u0105zane z titin\u0105<\/p>\n\n\n\n

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

Zdiagnozowano mnie w wieku 23 lat.<\/p>\n\n\n\n

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

Zacz\u0105\u0142em zauwa\u017ca\u0107, \u017ce \"normalne\" rzeczy staj\u0105 si\u0119 dla mnie coraz trudniejsze - chodzenie po schodach, wstawanie po siedzeniu na pod\u0142odze, skakanie i kucanie. Mia\u0142em ci\u0105g\u0142e zm\u0119czenie mi\u0119\u015bni i przypadkowo upada\u0142em. Gdy straci\u0142em zdolno\u015b\u0107 biegania, a upadki sta\u0142y si\u0119 cz\u0119stsze, wiedzieli\u015bmy, \u017ce co\u015b jest nie tak.<\/p>\n\n\n\n

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

Nie. Jestem jedyny i niepowtarzalny!<\/p>\n\n\n\n

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

Jest to okrutna choroba, poniewa\u017c nie tylko w naturalny spos\u00f3b odbiera nam si\u0142\u0119 i mobilno\u015b\u0107, ale tak\u017ce pr\u00f3buje odebra\u0107 nam nadziej\u0119 i kontrol\u0119 nad w\u0142asnym \u017cyciem. Podczas gdy nasze cia\u0142a codziennie si\u0119 pogarszaj\u0105, a w zasi\u0119gu wzroku nie ma \u017cadnego leczenia ani lekarstwa, \u0142atwo jest czu\u0107 si\u0119 pokonanym i zaniedbanym. Uwa\u017cam, \u017ce jest to jedno z najwi\u0119kszych wyzwa\u0144 - utrzymanie g\u0142owy nad wod\u0105. Dlatego tak wa\u017cne jest, aby zachowa\u0107 pozytywne nastawienie i \u017cy\u0107 najlepiej jak potrafimy, bez wzgl\u0119du na to, jak to wygl\u0105da!<\/p>\n\n\n\n

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

Mia\u0142em niesamowite szcz\u0119\u015bcie i mo\u017cliwo\u015b\u0107 podr\u00f3\u017cowania po kraju (44 stany), graj\u0105c muzyk\u0119 z jednymi z najlepszych facet\u00f3w na \u015bwiecie. Nie jestem pewien, jak d\u0142ugo jeszcze b\u0119d\u0119 m\u00f3g\u0142 to robi\u0107, ale to by\u0142o spe\u0142nienie moich marze\u0144. Jestem r\u00f3wnie\u017c dumnym absolwentem Texas Christian University (Go Frogs) i by\u0142em mistrzem stanu w szachach, gdy by\u0142em ch\u0142opcem. My\u015bl\u0119 te\u017c, \u017ce jestem raczej dobrym psim tat\u0105!<\/p>\n\n\n\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\n\n\n

Uczy mnie nowych rzeczy ka\u017cdego dnia. W tak kr\u00f3tkim czasie zyska\u0142em perspektyw\u0119 na ca\u0142e \u017cycie. Sta\u0142em si\u0119 lepszym rozwi\u0105zywaczem problem\u00f3w. Jestem bardziej cierpliwy wobec siebie i innych. Doceniam ka\u017cd\u0105 chwil\u0119 i ka\u017cdy krok, kt\u00f3ry mi pozosta\u0142. U\u015bmiecham si\u0119 wi\u0119cej, patrz\u0119 na chmury i traktuj\u0119 teraz wszystkich \u0142agodnie. Staram si\u0119 by\u0107 czyim\u015b bohaterem. Poza tym, \u017ce cierpi\u0119 na LGMD, jestem najszcz\u0119\u015bliwszym \u017cyj\u0105cym cz\u0142owiekiem z najlepsz\u0105 rodzin\u0105 i przyjaci\u00f3\u0142mi, o jakich mo\u017cna prosi\u0107.<\/p>\n\n\n\n

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

\u017be jeste\u015bmy lud\u017ami z celami, aspiracjami, pasjami i uczuciami - tak jak wszyscy inni. Wielu z nas by\u0142o kiedy\u015b ca\u0142kiem \"normalnych\". Gdyby wszyscy wiedzieli, przez jakie przeszkody musi przeskakiwa\u0107 osoba z LGMD, aby przej\u015b\u0107 przez normaln\u0105 codzienn\u0105 rutyn\u0119, ludzie zacz\u0119liby rozumie\u0107, jak twarda i odporna jest nasza spo\u0142eczno\u015b\u0107. Zrozumieliby, \u017ce jest to spo\u0142eczno\u015b\u0107 i choroba, o kt\u00f3r\u0105 warto walczy\u0107. B\u0105d\u017a wi\u0119c or\u0119downikiem, podczas gdy badacze i naukowcy odkryj\u0105 te tajemnicze choroby!<\/p>\n\n\n\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\n\n\n

Biega\u0142bym po podw\u00f3rku z psem, ta\u0144czy\u0142 z mi\u0142\u0105 i \u0142adn\u0105 kobiet\u0105, gra\u0142 w baseball z przyjaci\u00f3\u0142mi i prawdopodobnie wspina\u0142 si\u0119 na g\u00f3r\u0119 tylko dlatego!<\/p>\n\n\n\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: http:\/\/lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSpotlight interview\u201d Name:  Dylan                                  Age:  28 years old Country: […]<\/p>","protected":false},"author":1,"featured_media":3465,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,66],"tags":[],"class_list":["post-3464","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2j"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Dylan - 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\/2020\/08\/24\/dylan\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Dylan - 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