{"id":1503,"date":"2017-07-11T11:52:08","date_gmt":"2017-07-11T16:52:08","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1503"},"modified":"2017-07-11T11:52:08","modified_gmt":"2017-07-11T16:52:08","slug":"ralph","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2017\/07\/11\/ralph\/","title":{"rendered":"OSOBA Z LGMD: Ralph"},"content":{"rendered":"

Nazwa<\/strong>: Ralph\u00a0 Wiek<\/strong>24 lata<\/p>\n

Kraj<\/strong>: Republika Po\u0142udniowej Afryki<\/p>\n

Podtyp LGMD<\/strong>: LGMD2B\"\"<\/a><\/p>\n

 <\/p>\n

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

Zosta\u0142em zdiagnozowany w wieku 23 lat - tu\u017c po uko\u0144czeniu kursu nurkowania ratunkowego.<\/p>\n

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

Prowadz\u0119 bardzo aktywny, pe\u0142en adrenaliny tryb \u017cycia i kiedy zauwa\u017cy\u0142em, \u017ce z dnia na dzie\u0144 biegam coraz wolniej, zacz\u0105\u0142em trenowa\u0107 coraz ci\u0119\u017cej. Ale w ko\u0144cu moje cia\u0142o stawa\u0142o si\u0119 coraz s\u0142absze. Po uko\u0144czeniu nurkowania zdecydowa\u0142em si\u0119 na pomoc.<\/p>\n

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

Nie, jestem jedyny, a moja rodzina bardzo ucierpia\u0142a, gdy us\u0142ysza\u0142a moj\u0105 diagnoz\u0119. Nie mia\u0142o to na mnie wp\u0142ywu. Postrzega\u0142em to jako kolejne wyzwanie. Ale po pewnym czasie rzeczywisto\u015b\u0107 naprawd\u0119 wsi\u0105k\u0142a... je\u015bli wiesz, co mam na my\u015bli.<\/p>\n

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

Akceptacja. Fakt, \u017ce nie mog\u0119 wykonywa\u0107 wszystkich czynno\u015bci, kt\u00f3re kiedy\u015b wykonywa\u0142em, jest sporym wyzwaniem. Ci\u0119\u017cko by\u0142o zrezygnowa\u0107 ze skok\u00f3w spadochronowych, raftingu i off-roadu, poniewa\u017c zbytnio obci\u0105\u017ca\u0142y moje r\u0119ce i nogi.<\/p>\n

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

\u017by\u0107 \u017cyciem, o jakim marzy wi\u0119kszo\u015b\u0107 ludzi i by\u0107 inspiracj\u0105 dla wszystkich wok\u00f3\u0142 mnie. Kiedy masz w\u0142a\u015bciwe nastawienie i siln\u0105 wol\u0119, nie ma rzeczy, kt\u00f3rej nie mo\u017cesz osi\u0105gn\u0105\u0107.<\/p>\n

Pewna historia inspiruje mnie do \u017cycia pe\u0142ni\u0105 \u017cycia. Publius Horatius Cocles by\u0142 oficerem w armii staro\u017cytnej Republiki Rzymskiej, kt\u00f3ry s\u0142ynnie broni\u0142 Pons Sublicius podczas wojny mi\u0119dzy Rzymem a Clusium. Wiersz brzmi nast\u0119puj\u0105co: Wtedy przem\u00f3wi\u0142 dzielny Horacjusz, kapitan bramy: \"Ka\u017cdemu cz\u0142owiekowi na tej ziemi. \u015amier\u0107 przychodzi wcze\u015bnie lub p\u00f3\u017ano. A jak cz\u0142owiek mo\u017ce umrze\u0107 lepiej ni\u017c stawiaj\u0105c czo\u0142a przera\u017caj\u0105cym przeciwno\u015bciom\".<\/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

Zawsze wierzy\u0142em, \u017ce jestem nie do z\u0142amania. Od czasu mojej diagnozy zda\u0142em sobie spraw\u0119, \u017ce jestem nie do zatrzymania. Jest tylko \u017cycie i \u015bmier\u0107, a wybieraj\u0105c \u017cycie, moje marzenia s\u0105 tylko o krok od spe\u0142nienia. I zamierzam wype\u0142ni\u0107 t\u0119 luk\u0119.<\/p>\n

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

Nigdy nie patrz z g\u00f3ry na ludzi, kt\u00f3rzy cierpi\u0105 na jak\u0105kolwiek form\u0119 choroby. Spos\u00f3b, w jaki musisz \u017cy\u0107 i pokona\u0107 tak\u0105 przeszkod\u0119, mo\u017ce by\u0107 dla ciebie zbyt trudny do zniesienia.<\/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

Zacz\u0119\u0142abym biega\u0107 i nigdy bym nie przesta\u0142a, dop\u00f3ki nie z\u0142ama\u0142yby mi si\u0119 nogi, bo w tej chwili... b\u0119d\u0119 wolna!<\/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":"

Name:\u00a0 Ralph\u00a0 Age: 24 yrs. old Country: South Africa LGMD […]<\/p>","protected":false},"author":1,"featured_media":1502,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[77],"class_list":["post-1503","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2b-south-africa"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Ralph - 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\/2017\/07\/11\/ralph\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Ralph - 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