{"id":5506,"date":"2021-09-02T15:13:45","date_gmt":"2021-09-02T15:13:45","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5506"},"modified":"2024-02-09T14:24:01","modified_gmt":"2024-02-09T14:24:01","slug":"cyanne","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2021\/09\/02\/cyanne\/","title":{"rendered":"OSOBA Z LGMD: Cyanne"},"content":{"rendered":"

LGMD \"Wywiad w centrum uwagi\"
\n<\/strong><\/p>\n

\"\"<\/p>\n

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

Wiek<\/strong>:\u00a0 29<\/p>\n

Kraj<\/strong>: Australia Po\u0142udniowa<\/p>\n

Podtyp LGMD<\/strong>: LGMD typu 2i \/ zwi\u0105zany z dystroglikanem R9<\/p>\n

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

Dystrofi\u0119 mi\u0119\u015bniow\u0105 zdiagnozowano u mnie, gdy mia\u0142em zaledwie 2 lata. Dopiero w wieku 21 lat dowiedzia\u0142em si\u0119, \u017ce mam LGMD typu 2i. Teraz nazywam si\u0119 R9, poniewa\u017c nazwa zosta\u0142a zmieniona.<\/p>\n

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

Pierwszym objawem, kt\u00f3ry zauwa\u017cy\u0142a moja mama, by\u0142o to, \u017ce nie mog\u0142em utrzyma\u0107 g\u0142owy w g\u00f3rze, gdy by\u0142em w chodziku.
\nPoza tym nie raczkowa\u0142em, kiedy inni w moim wieku raczkowali. Po prostu bardzo si\u0119 zmaga\u0142em; fizycznie.<\/p>\n

Objawem, kt\u00f3ry zauwa\u017cy\u0142em po raz pierwszy, by\u0142o to, \u017ce nie mog\u0142em nad\u0105\u017cy\u0107 za innymi dzie\u0107mi. Po prostu nie by\u0142em tak szybki jak one, ale nigdy mi to nie przeszkadza\u0142o! Wiedzia\u0142em, \u017ce jestem inny i nie przeszkadza\u0142o mi to.<\/p>\n

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

Moja siostra bli\u017aniaczka r\u00f3wnie\u017c ma LGMD2i, ale nie ma innych znanych przypadk\u00f3w tej choroby w rodzinie.<\/p>\n

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

Zmagam si\u0119 z utrat\u0105 niezale\u017cno\u015bci. Jest ona coraz bardziej poza moim zasi\u0119giem, w miar\u0119 jak pogarsza si\u0119 m\u00f3j stan zdrowia. Podobnie jak z \u017cyciem. Czy kiedykolwiek b\u0119d\u0119 w stanie osi\u0105gn\u0105\u0107 wymarzon\u0105 prac\u0119? Czy spotkam m\u0119\u017cczyzn\u0119 moich marze\u0144? Jak d\u0142ugo jeszcze b\u0119d\u0119 mog\u0142a robi\u0107 rzeczy, kt\u00f3re kocham?<\/p>\n

Jednym z moich innych wyzwa\u0144 w \u017cyciu z LGMD jest to, \u017ce zbyt cz\u0119sto ludzie widz\u0105 tylko m\u00f3j w\u00f3zek inwalidzki. Nie widz\u0105 osoby, kt\u00f3ra na nim siedzi. Ci\u0119\u017cko pracuj\u0119, aby to zmieni\u0107, podnosz\u0105c \u015bwiadomo\u015b\u0107 w mojej spo\u0142eczno\u015bci i szerzej. Pokazuj\u0105c i wyja\u015bniaj\u0105c, \u017ce osoby niepe\u0142nosprawne te\u017c s\u0105 lud\u017ami. Mamy takie same pragnienia i potrzeby jak wszyscy inni.<\/p>\n

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

Wow, czuj\u0119 si\u0119, jakbym chcia\u0142 skopiowa\u0107 i wklei\u0107 tutaj swoje CV. Ha ha!<\/p>\n

Przez lata wiele si\u0119 uczy\u0142em, poniewa\u017c zmienia\u0142em \u015bcie\u017cki kariery. Sp\u0119dzi\u0142am co najmniej 10 lat studiuj\u0105c architektur\u0119, projektowanie wn\u0119trz i dekoracj\u0119. Jednak od tego czasu zmieni\u0142am \u015bcie\u017ck\u0119 kariery, teraz zajmuj\u0119 si\u0119 doradztwem i przygl\u0105dam si\u0119 arteterapii. Prawdopodobnie przez lata uko\u0144czy\u0142am \u0142\u0105cznie 20 kurs\u00f3w. Niekt\u00f3re z tych kurs\u00f3w to tylko kursy dzienne, bez paniki! Udziela\u0142em si\u0119 r\u00f3wnie\u017c jako wolontariusz. Plus, bycie rzecznikiem tych, kt\u00f3rzy maj\u0105 trudno\u015bci z m\u00f3wieniem. By\u0142em zaanga\u017cowany w udost\u0119pnienie mojej pla\u017cy dla w\u00f3zk\u00f3w inwalidzkich. Zbieraj\u0105c pieni\u0105dze na w\u00f3zki inwalidzkie i maty pla\u017cowe. Ci\u0119\u017cko pracowa\u0142em r\u00f3wnie\u017c nad obiektem Changing Places. I wiele wi\u0119cej.<\/p>\n

Przez lata wyst\u0119powa\u0142em publicznie na imprezach i forach, \u015bci\u015ble wsp\u00f3\u0142pracowa\u0142em z Rad\u0105 Miasta i by\u0142em w Parlamencie. By\u0142em zapraszany na wydarzenia i fora oraz zdobywa\u0142em nagrody. Mam nawet w\u0142asn\u0105 firm\u0119. To tylko wierzcho\u0142ek g\u00f3ry lodowej!<\/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

Zdecydowanie mia\u0142o to na mnie wp\u0142yw! To, co robi\u0119 dzisiaj, zawdzi\u0119czam chorobie LGMD. Nie s\u0105dz\u0119, \u017ce by\u0142bym dzi\u015b t\u0105 sam\u0105 osob\u0105, gdyby nie to.<\/p>\n

Jestem o wiele bardziej cierpliwy, otwarty i przyziemny, rozumiej\u0105c, \u017ce nie wszystko przychodzi bez wyzwa\u0144. Doceniam rzeczy, kt\u00f3re nadal mog\u0119 robi\u0107, takie jak rysowanie czy malowanie, wiedz\u0105c, \u017ce pewnego dnia mog\u0119 straci\u0107 r\u00f3wnie\u017c t\u0119 umiej\u0119tno\u015b\u0107. Ale zawsze b\u0119d\u0119 mie\u0107 silny umys\u0142. Mog\u0119 straci\u0107 fizyczn\u0105 zdolno\u015b\u0107 do robienia r\u00f3\u017cnych rzeczy, ale mam silny, zdrowy umys\u0142 i zamierzam z niego korzysta\u0107 a\u017c do \u015bmierci!<\/p>\n

Chyba zawsze mia\u0142em silne pragnienie pomagania ludziom. Wiedz\u0105c, \u017ce odrobina pomocy mo\u017ce przej\u015b\u0107 d\u0142ug\u0105 drog\u0119. Zamierzam zaj\u0105\u0107 si\u0119 doradztwem i by\u0107 mo\u017ce arteterapi\u0105, aby pom\u00f3c potrzebuj\u0105cym.<\/p>\n

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

C\u00f3\u017c, to proste. LGMD SUCKS!!! Dystrofia mi\u0119\u015bniowa ko\u0144czyn dolnych jest chorob\u0105, kt\u00f3ra powoduje os\u0142abienie mi\u0119\u015bni. Twoje mi\u0119\u015bnie zanikaj\u0105, nie mo\u017cesz zyska\u0107 ani zwi\u0119kszy\u0107 si\u0142y. Mi\u0119\u015bnie po prostu pogarszaj\u0105 si\u0119 z czasem, co mo\u017ce niezwykle utrudnia\u0107 \u017cycie. \u017badne \u0107wiczenia ani podnoszenie ci\u0119\u017car\u00f3w nie pomog\u0105 mi zbudowa\u0107 mi\u0119\u015bni jak przeci\u0119tny Jo. To rodzaj schorzenia, kt\u00f3re z czasem zawsze b\u0119dzie si\u0119 pogarsza\u0107. Nie ma lekarstwa ani lek\u00f3w, kt\u00f3re mog\u0142yby pom\u00f3c.<\/p>\n

Utrudnia to \u017cycie, zw\u0142aszcza gdy miejsca nie s\u0105 dost\u0119pne dla w\u00f3zk\u00f3w inwalidzkich. To tylko jedna przeszkoda za drug\u0105!<\/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

Przytuli\u0142bym moj\u0105 mam\u0119 i moich braci. Straci\u0142em umiej\u0119tno\u015b\u0107 przytulania lata temu! Skaka\u0142bym, skaka\u0142 i skaka\u0142! My\u015bl\u0119, \u017ce by\u0142bym zagubiony. Nie wiedzia\u0142abym nawet od czego zacz\u0105\u0107 i co robi\u0107!<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5507,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,35],"tags":[],"class_list":["post-5506","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2i"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Cyanne - 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=\"http:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2021\/09\/02\/cyanne\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Cyanne - 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