{"id":8617,"date":"2024-10-27T18:33:33","date_gmt":"2024-10-27T18:33:33","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=8617"},"modified":"2024-10-27T18:33:33","modified_gmt":"2024-10-27T18:33:33","slug":"individual-with-lgmd-nancy","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2024\/10\/27\/individual-with-lgmd-nancy\/","title":{"rendered":"OSOBA Z LGMD: Nancy"},"content":{"rendered":"<p><img decoding=\"async\" class=\"lazyload aligncenter wp-image-8618 size-medium\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/10\/LGMD2C-Nancy-P-300x169.png\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/10\/LGMD2C-Nancy-P-300x169.png\" alt=\" \" width=\"300\" height=\"169\" srcset=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27300%27%20height%3D%27169%27%20viewBox%3D%270%200%20300%20169%27%3E%3Crect%20width%3D%27300%27%20height%3D%27169%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/10\/LGMD2C-Nancy-P-200x113.png 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/10\/LGMD2C-Nancy-P-300x169.png 300w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/10\/LGMD2C-Nancy-P-400x225.png 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/10\/LGMD2C-Nancy-P-600x338.png 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/10\/LGMD2C-Nancy-P-768x432.png 768w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/10\/LGMD2C-Nancy-P-800x450.png 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/10\/LGMD2C-Nancy-P-1024x576.png 1024w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/10\/LGMD2C-Nancy-P-1200x675.png 1200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2024\/10\/LGMD2C-Nancy-P.png 1280w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 300px) 100vw, 300px\" \/><\/p>\n<p><strong>Nazwa<\/strong>:  Nancy<\/p>\n<p><strong>Wiek<\/strong>: 76<\/p>\n<p><strong>Kraj<\/strong>: USA<\/p>\n<p><strong>Podtyp LGMD<\/strong>: LGMD 2C\/R5 zwi\u0105zany z sarkoglikanem gamma<\/p>\n<p>&nbsp;<\/p>\n<p><strong>W jakim wieku zosta\u0142e\u015b zdiagnozowany?<\/strong>?<\/p>\n<p>W wieku 25 lat b\u0142\u0119dnie zdiagnozowano u mnie zapalenie wielomi\u0119\u015bniowe i przez 27 lat by\u0142em leczony prednizonem.  Pierwsz\u0105 dok\u0142adn\u0105 diagnoz\u0119 postawiono mi po pi\u0119\u0107dziesi\u0105tce.<\/p>\n<p><strong>Jakie by\u0142y pierwsze objawy? <\/strong><\/p>\n<p>Pami\u0119tam, jak by\u0142em w przedszkolu, biega\u0142em po boisku i by\u0142em ostatni. Ale tak naprawd\u0119 nie mia\u0142em wi\u0119kszych problem\u00f3w, dop\u00f3ki nie przeprowadzi\u0142em si\u0119 do dwupi\u0119trowego domu na studiach. Wchodzenie po schodach i wstawanie z pod\u0142ogi sta\u0142o si\u0119 bardzo trudne.<\/p>\n<p><strong>Czy masz innych cz\u0142onk\u00f3w rodziny cierpi\u0105cych na LGMD?\u00a0 <\/strong><\/p>\n<p>Nie, nie mam.<\/p>\n<p><strong>Co uwa\u017casz za najwi\u0119ksze wyzwanie w \u017cyciu z LGMD?<\/strong>?<\/p>\n<p>Moje problemy post\u0119powa\u0142y bardzo powoli.  Mia\u0142em bardzo ma\u0142o wyzwa\u0144 w szkole, nawet na studiach.  Gdy rozpocz\u0105\u0142em karier\u0119 nauczyciela, mia\u0142em problemy ze wstawaniem z pozycji siedz\u0105cej, a nast\u0119pnie z podnoszeniem si\u0119 z kraw\u0119\u017cnik\u00f3w.  Podnoszenie n\u00f3g do jazdy sta\u0142o si\u0119 trudne, a zm\u0119czenie sta\u0142o si\u0119 problemem, ale nadal uczy\u0142em.  Zawsze wspiera\u0142 mnie bardzo kochaj\u0105cy, troskliwy m\u0105\u017c, wspania\u0142e dzieci, cudowna rodzina, przyjaciele i wsp\u00f3\u0142pracownicy, co pozwoli\u0142o mi zaakceptowa\u0107 moj\u0105 sytuacj\u0119.  Najpierw u\u017cywa\u0142am laski, chodzika, a nast\u0119pnie w\u00f3zka inwalidzkiego.  Wyzwania by\u0142y, ale nigdy nie czu\u0142am si\u0119 nimi przyt\u0142oczona. Ponadto powolny post\u0119p LGMD umo\u017cliwi\u0142 dostosowanie si\u0119 do nowych wyzwa\u0144.  Teraz jestem ograniczony co do tego, gdzie mog\u0119 si\u0119 uda\u0107.  Podr\u00f3\u017cowanie zawsze jest przygod\u0105.  By\u0142em w kilku windach towarowych i utkn\u0105\u0142em w kilku \u0142azienkach, ale teraz przynajmniej mog\u0119 si\u0119 z tego \u015bmia\u0107.<\/p>\n<p><strong>Jakie jest twoje najwi\u0119ksze osi\u0105gni\u0119cie?\u00a0 <\/strong><\/p>\n<p>Powiedzia\u0142bym, \u017ce wystarczy zachowa\u0107 dobre nastawienie. Uda\u0142o mi si\u0119 wyj\u015b\u0107 za m\u0105\u017c, urodzi\u0107 bli\u017aniaki i prowadzi\u0107 w miar\u0119 normalne \u017cycie, jednocze\u015bnie dostosowuj\u0105c si\u0119 do zmian w moim \u017cyciu.<\/p>\n<p><strong>Jak LGMD wp\u0142yn\u0119\u0142o na to, \u017ce sta\u0142e\u015b si\u0119 osob\u0105, kt\u00f3r\u0105 jeste\u015b dzisiaj?\u00a0 <\/strong><\/p>\n<p>Nauczy\u0142o mnie to pozytywnego nastawienia i wiary w to, \u017ce wszystko si\u0119 u\u0142o\u017cy.  Zawsze pomaga mie\u0107 w \u017cyciu ludzi, kt\u00f3rzy ci\u0119 kochaj\u0105 i wspieraj\u0105.<\/p>\n<p><strong>Co chcia\u0142by\u015b, aby \u015bwiat dowiedzia\u0142 si\u0119 o LGMD?<\/strong>?<\/p>\n<p>Tak, trudno jest nawigowa\u0107, a niekt\u00f3re dni s\u0105 z pewno\u015bci\u0105 trudniejsze ni\u017c inne, ale je\u015bli jeste\u015b otoczony przez ludzi, kt\u00f3rzy pozostaj\u0105 pozytywni i zach\u0119caj\u0105 ci\u0119, mo\u017cesz osi\u0105gn\u0105\u0107 wi\u0119cej rzeczy, ni\u017c mog\u0142oby si\u0119 wydawa\u0107.<\/p>\n<p><strong>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<p>Chcia\u0142abym pom\u00f3c mojemu m\u0119\u017cowi w zamian za wszystkie lata, przez kt\u00f3re si\u0119 mn\u0105 opiekowa\u0142.   Chcia\u0142abym m\u00f3c przytuli\u0107 moj\u0105 rodzin\u0119 i przyjaci\u00f3\u0142.  A dla zabawy chcia\u0142abym ta\u0144czy\u0107.<\/p>","protected":false},"excerpt":{"rendered":"<p>Name:\u00a0 Nancy Age: 76 Country: USA LGMD Sub-Type: LGMD 2C\/R5 [&hellip;]<\/p>","protected":false},"author":3,"featured_media":8618,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,75],"tags":[125],"class_list":["post-8617","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2c","tag-lgmd2c-united-states"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>INDIVIDUAL WITH LGMD: Nancy - 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\/2024\/10\/27\/individual-with-lgmd-nancy\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Nancy - 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