{"id":8006,"date":"2024-04-19T15:18:17","date_gmt":"2024-04-19T15:18:17","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=8006"},"modified":"2024-04-19T15:27:01","modified_gmt":"2024-04-19T15:27:01","slug":"8006","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2024\/04\/19\/8006\/","title":{"rendered":"OSOBA Z LGMD: Amanda"},"content":{"rendered":"

\"\"<\/p>\n

Nazwa<\/strong>: Amanda<\/p>\n

Wiek<\/strong>: 26<\/p>\n

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

Podtyp LGMD<\/strong>: LGMD2B\/R2 Zwi\u0105zane z dysferlin\u0105<\/p>\n

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

Zdiagnozowano mnie w wieku 14 lat.<\/p>\n

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

Moje pierwsze objawy pojawi\u0142y si\u0119 dopiero w wieku oko\u0142o 20 lat. Wtedy zacz\u0105\u0142em naprawd\u0119 zauwa\u017ca\u0107 objawy os\u0142abienia\/zaniku mi\u0119\u015bni. Zauwa\u017cy\u0142em to g\u0142\u00f3wnie w sytuacjach, w kt\u00f3rych u\u017cywa\u0142em dolnej po\u0142owy cia\u0142a, takich jak schody lub przysiady. Ku mojemu zaskoczeniu, odczuwa\u0142em r\u00f3wnie\u017c znaczny b\u00f3l w kolanach. Teraz wiem, \u017ce w nich r\u00f3wnie\u017c wyst\u0119puje zanik mi\u0119\u015bni.<\/p>\n

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

Ja nie.<\/p>\n

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

Moje najwi\u0119ksze wyzwania bardzo si\u0119 zmieni\u0142y w ci\u0105gu ostatnich kilku lat. Mam na tyle szcz\u0119\u015bcia, \u017ce nadal poruszam si\u0119 samodzielnie, cho\u0107 mam problemy z mobilno\u015bci\u0105.<\/p>\n

W tej chwili powiedzia\u0142bym, \u017ce moim najwi\u0119kszym wyzwaniem jest fizycznie<\/em> jest nieprzewidywalno\u015b\u0107 moich zaostrze\u0144 i b\u00f3lu. Szybko pojawiaj\u0105ce si\u0119 zm\u0119czenie, sztywno\u015b\u0107 i b\u00f3l mog\u0105 czasami bardzo utrudnia\u0107 prac\u0119 i \u017cycie pe\u0142ni\u0105 \u017cycia.<\/p>\n

Moje najwi\u0119ksze wyzwania emocjonalnie <\/em>by\u0142oby tajemnic\u0105 przysz\u0142o\u015bci i tego, czy doczekam si\u0119 wyleczenia za mojego \u017cycia. My\u015bl\u0119 o tym z minuty na minut\u0119. Przez lata naprawd\u0119 stara\u0142em si\u0119 edukowa\u0107 moje zespo\u0142y medyczne na temat LGMD. Poza moimi specjalistami, inni lekarze\/piel\u0119gniarki\/personel medyczny zazwyczaj nie maj\u0105 poj\u0119cia, czym jest ta choroba, co jest niezwykle wyczerpuj\u0105ce z perspektywy pacjenta.<\/p>\n

Jaki jest tw\u00f3j <\/strong>najwi\u0119ksze osi\u0105gni\u0119cie?<\/strong><\/p>\n

Kiedy zdiagnozowano u mnie LGMD, musia\u0142em porzuci\u0107 wszystkie sporty, kt\u00f3re uprawia\u0142em, poniewa\u017c lekarze martwili si\u0119 o m\u00f3j poziom CK i nie wiedzieli, jakie dalsze szkody wyrz\u0105dzam. W 2012 roku LGMD 2B by\u0142a wci\u0105\u017c niewiarygodnie nowa. By\u0142em bardzo wysportowany, wi\u0119c rezygnacja z uprawiania sportu mnie za\u0142ama\u0142a. Postanowi\u0142em jednak po\u015bwi\u0119ci\u0107 ca\u0142\u0105 energi\u0119 na tworzenie sztuki i rozwijanie mojej mi\u0142o\u015bci do niej. Sko\u0144czy\u0142o si\u0119 na tym, \u017ce znalaz\u0142em r\u00f3\u017cne formy sztuki, kt\u00f3re mnie interesowa\u0142y, a nast\u0119pnie rozpocz\u0105\u0142em karier\u0119 w jednej z nich.<\/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

Opr\u00f3cz tego, jak choroba LGMD wp\u0142yn\u0119\u0142a na moj\u0105 karier\u0119, powiedzia\u0142bym, \u017ce zmieni\u0142a ona r\u00f3wnie\u017c m\u00f3j spos\u00f3b my\u015blenia. Cho\u0107 jest to niesprawiedliwe, osoby cierpi\u0105ce na LGMD nie maj\u0105 innego wyj\u015bcia, jak tylko zmieni\u0107 swoje nastawienie, je\u015bli chc\u0105 znale\u017a\u0107 szcz\u0119\u015bcie w tej chorobie. Zawsze pracuj\u0119 nad swoim zdrowiem psychicznym w tym obszarze i odkry\u0142em, \u017ce terapia i wspieraj\u0105ca spo\u0142eczno\u015b\u0107 by\u0142y g\u0142\u00f3wnymi czynnikami zmieniaj\u0105cymi zasady gry.<\/p>\n

Niedawno zdecydowa\u0142em si\u0119 za\u0142o\u017cy\u0107 bloga: HerChronicWellness.com<\/a> gdzie dziel\u0119 si\u0119 chwilami z mojej przewlek\u0142ej podr\u00f3\u017cy, aby u\u0142atwi\u0107 innym przewlek\u0142\u0105 podr\u00f3\u017c. Uruchamiam r\u00f3wnie\u017c sekcj\u0119 \"Polecane\", aby inni mogli dzieli\u0107 si\u0119 swoimi przewlek\u0142ymi historiami i poradami. Zapraszam do jej odwiedzenia!<\/p>\n

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

Chc\u0119, \u017ceby \u015bwiat wiedzia\u0142 wszystko<\/em> o LGMD! Ale przede wszystkim czas jest najwa\u017cniejszy. Jest to choroba post\u0119puj\u0105ca, na kt\u00f3r\u0105 nie ma lekarstwa. Wszystkie przypadki LGMD wygl\u0105daj\u0105 inaczej, a ja uwa\u017cam si\u0119 za niesamowicie szcz\u0119\u015bliwy przypadek. Ludzie cierpi\u0105, a jedynym sposobem na znalezienie lekarstwa jest podnoszenie \u015bwiadomo\u015bci i edukowanie ludzi w naszych spo\u0142eczno\u015bciach - naszych lekarzy, wsp\u00f3\u0142pracownik\u00f3w, przyjaci\u00f3\u0142 i rodzin.<\/p>\n

Chcia\u0142bym r\u00f3wnie\u017c, aby \u015bwiat wiedzia\u0142, \u017ce chocia\u017c LGMD wygl\u0105da inaczej u ka\u017cdego, to wygl\u0105da r\u00f3wnie\u017c inaczej dla<\/em> ka\u017cdy codziennie<\/em>. Nie mog\u0119 zagwarantowa\u0107, jak moje cia\u0142o b\u0119dzie si\u0119 czu\u0142o jutro i nie mog\u0119 przewidzie\u0107, jak to si\u0119 rozwinie w czasie. To, \u017ce zrobi\u0142em co\u015b wczoraj, nie oznacza, \u017ce mog\u0119 to zrobi\u0107 dzisiaj. Niestety, moje cia\u0142o jest bardziej nieprzewidywalne ni\u017c przeci\u0119tnego cz\u0142owieka.<\/p>\n

Je\u015bli LGMD mo\u017ce by\u0107 <\/strong>\"<\/strong>wyleczony\" jutro, jaka by\u0142aby pierwsza rzecz, kt\u00f3r\u0105 chcia\u0142by\u015b zrobi\u0107?<\/strong>?<\/p>\n

Nie mog\u0119 si\u0119 zdecydowa\u0107, bo jest tyle rzeczy, kt\u00f3re chcia\u0142abym zrobi\u0107! Zdecydowanie zaplanowa\u0142abym wyjazd na narty. Zaplanowa\u0142bym wycieczk\u0119 piesz\u0105. Posz\u0142abym pobiega\u0107 z moim psem. Pojecha\u0142abym w 11-godzinn\u0105 podr\u00f3\u017c do mojej najlepszej przyjaci\u00f3\u0142ki w Tennessee. Pojecha\u0142bym do Disneylandu i przeszed\u0142 ca\u0142y park. Zarezerwowa\u0142bym lot do Nowego Jorku i spacerowa\u0142 po ca\u0142ym mie\u015bcie przez ca\u0142y dzie\u0144. Zapisa\u0142bym si\u0119 na trening z przyjaci\u00f3\u0142mi. Posz\u0142abym na \u0142y\u017cwy i nauczy\u0142a si\u0119 je\u017adzi\u0107 na rolkach. Zrobi\u0142bym wszystkie rzeczy, kt\u00f3re kiedy\u015b uwa\u017ca\u0142em za oczywiste, i wiele wi\u0119cej.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":8005,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[23,124,16],"class_list":["post-8006","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2b","tag-lgmdr2","tag-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Amanda - 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\/2024\/04\/19\/8006\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Amanda - 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