{"id":1382,"date":"2016-10-26T14:12:37","date_gmt":"2016-10-26T19:12:37","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1382"},"modified":"2016-10-26T14:12:37","modified_gmt":"2016-10-26T19:12:37","slug":"amie","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2016\/10\/26\/amie\/","title":{"rendered":"OSOBA Z LGMD: Amie"},"content":{"rendered":"<p><strong>LGMD \"WYWIAD W \u015aWIETLE REFLEKTOR\u00d3W\"<\/strong><\/p>\n<p><strong>Nazwa<\/strong>:  Amie\u00a0 <strong>Wiek<\/strong>: 31 lat<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2016\/10\/LGMD2J-Amie.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1381 alignright\" src=\"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-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2016\/10\/LGMD2J-Amie-300x169.png\" alt=\"lgmd2j-amie\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>Kraj<\/strong>: Stany Zjednoczone<\/p>\n<p><strong>Podtyp LGMD<\/strong>:  LGMD2J (titinopatia)<\/p>\n<p>&nbsp;<\/p>\n<p><strong>W jakim wieku zosta\u0142e\u015b zdiagnozowany?<\/strong>:<\/p>\n<p>W wieku 31 lat zdiagnozowano u mnie LGMD2J - znan\u0105 r\u00f3wnie\u017c jako titinopatia.<\/p>\n<p><strong>Jakie by\u0142y pierwsze objawy?<\/strong>:<\/p>\n<p>Zawsze mia\u0142em problemy z nogami i chodzeniem, ale zawsze m\u00f3wiono mi, \u017ce to z powodu kr\u00f3tkich \u015bci\u0119gien Achillesa. Po operacjach maj\u0105cych na celu ich wyd\u0142u\u017cenie, moje \u0142ydki zanik\u0142y. Moje mi\u0119\u015bnie rdzenia wydawa\u0142y si\u0119 s\u0142abe i zawsze my\u015bla\u0142am, \u017ce to z powodu dw\u00f3ch cesarskich ci\u0119\u0107. Dopiero w tym roku moje cia\u0142o drastycznie si\u0119 os\u0142abi\u0142o i nie mog\u0142am tego d\u0142u\u017cej ignorowa\u0107, wi\u0119c postanowi\u0142am znale\u017a\u0107 odpowiedzi.<\/p>\n<p><strong>Czy masz innych cz\u0142onk\u00f3w rodziny cierpi\u0105cych na LGMD?<\/strong><\/p>\n<p>\u017baden znany cz\u0142onek rodziny nie cierpi na t\u0119 chorob\u0119.<\/p>\n<p><strong>Co uwa\u017casz za najwi\u0119ksze wyzwanie w \u017cyciu z LGMD?<\/strong>:<\/p>\n<p>Moja choroba LGMD wi\u0105\u017ce si\u0119 z wieloma wyzwaniami. Codziennie zmagam si\u0119 ze \"zwyk\u0142ymi\" codziennymi czynno\u015bciami: przechodzeniem przez pok\u00f3j, wstawaniem z pozycji siedz\u0105cej, wchodzeniem po schodach lub pod g\u00f3r\u0119, wsiadaniem do ci\u0119\u017car\u00f3wki, schylaniem si\u0119, utrzymywaniem r\u00f3wnowagi itp. Czasami bywa to frustruj\u0105ce. Wiele trac\u0119 z powodu ci\u0105g\u0142ego b\u00f3lu, kt\u00f3ry odczuwam. Je\u015bli zrobi\u0119 zbyt wiele (co nie zajmuje du\u017co czasu), b\u0119dzie mnie to rozk\u0142ada\u0107 na wiele dni. Musz\u0119 wybiera\u0107, co jest wa\u017cne, a co nie. Wszystko to wp\u0142ywa r\u00f3wnie\u017c na \u017cycie mojej rodziny, za kt\u00f3r\u0105 ponosz\u0119 ci\u0119\u017car. Choroba LGMD zdecydowanie odebra\u0142a mi cz\u0119\u015b\u0107 wolno\u015bci, z czym trudno sobie poradzi\u0107, ale staram si\u0119 zachowa\u0107 pozytywne nastawienie!<\/p>\n<p><strong>Jakie jest twoje najwi\u0119ksze osi\u0105gni\u0119cie?<\/strong>:<\/p>\n<p>Moim najwi\u0119kszym osi\u0105gni\u0119ciem jest bycie mam\u0105, \u017con\u0105 i siostr\u0105! Mam dwie pi\u0119kne c\u00f3rki, niesamowitego m\u0119\u017ca i najbardziej wspieraj\u0105c\u0105 rodzin\u0119, o jak\u0105 mo\u017cna prosi\u0107. To oni s\u0105 powodem, dla kt\u00f3rego pozostaj\u0119 pozytywna i \"walcz\u0119 jak dziewczyna\"! Przez ca\u0142e \u017cycie chcia\u0142am by\u0107 mam\u0105 i mie\u0107 kochaj\u0105c\u0105 rodzin\u0119! Jestem zdecydowanie b\u0142ogos\u0142awiona!<\/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:<\/strong><\/p>\n<p>Chocia\u017c moja diagnoza jest do\u015b\u0107 nowa, zawsze wiedzia\u0142em, \u017ce co\u015b jest nie tak. Sam zdiagnozowa\u0142em u siebie LGMD, zanim uzyska\u0142em diagnoz\u0119 od mojego neurologa. Kiedy wi\u0119c otrzyma\u0142am wyniki bada\u0144, poczu\u0142am niezr\u0119czn\u0105 rado\u015b\u0107. W ko\u0144cu mia\u0142am diagnoz\u0119! Czuj\u0119, \u017ce choroba ta zosta\u0142a mi dana z jakiego\u015b powodu, na kt\u00f3ry nie znalaz\u0142am jeszcze odpowiedzi. Naprawd\u0119 wierz\u0119, \u017ce wszystko dzieje si\u0119 z jakiego\u015b powodu, a wyczucie czasu jest najwa\u017cniejsze. LGMD jest tak rzadk\u0105 chorob\u0105, \u017ce zdecydowanie nie jest znana w mojej okolicy, wi\u0119c zamierzam jak najwi\u0119cej bada\u0107 i wspiera\u0107 jak najwi\u0119cej os\u00f3b. Wiem, \u017ce jestem silna, nawet je\u015bli moje mi\u0119\u015bnie nie s\u0105. Ciesz\u0119 si\u0119 ma\u0142ymi rzeczami w \u017cyciu i \u017cyj\u0119 chwilami! Szukam te\u017c pozytyw\u00f3w w ka\u017cdej sytuacji. \u017bycie jest zbyt kr\u00f3tkie, by skupia\u0107 si\u0119 na negatywach!<\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p><strong>Co chcia\u0142by\u015b, aby \u015bwiat dowiedzia\u0142 si\u0119 o LGMD?<\/strong>:<\/p>\n<p>Chc\u0119, aby \u015bwiat dowiedzia\u0142 si\u0119, \u017ce 1 na 43 000 os\u00f3b cierpi na dystrofi\u0119 mi\u0119\u015bniow\u0105 obr\u0119czy ko\u0144czyny dolnej. Niestety nie ma lekarstwa na t\u0119 chorob\u0119.  Ze wzgl\u0119du na jej rzadko\u015b\u0107, finansowanie bada\u0144 jest mniejsze, co oddala mnie od otrzymania lekarstwa. LGMD mo\u017ce wkra\u015b\u0107 si\u0119 do ka\u017cdej rodziny i codziennie wp\u0142ywa na \u017cycie. Przewiduj\u0119, \u017ce w ko\u0144cu choroba ta odbierze mi zdolno\u015b\u0107 chodzenia, ale zamierzam z ni\u0105 walczy\u0107 tak d\u0142ugo, jak tylko b\u0119d\u0119 w stanie!<\/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>Od czego zacz\u0105\u0107? Zabra\u0142bym moje c\u00f3rki do Disney World, a potem na w\u0119dr\u00f3wk\u0119 po Kolorado! Wchodzi\u0142abym po schodach tylko dlatego, \u017ce mog\u0119! T\u0119skni\u0119 za ma\u0142ymi rzeczami, kt\u00f3re kiedy\u015b robi\u0142am, takimi jak zakupy, taniec, a nawet k\u0105piel! Nie zdajesz sobie sprawy z wolno\u015bci, kt\u00f3r\u0105 tracisz, dop\u00f3ki jej nie stracisz!<\/p>\n<p>&nbsp;<\/p>\n<p>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: <a href=\"https:\/\/www.lgmd-info.org\/pl\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name:\u00a0 Amie\u00a0 Age: 31 yrs old Country: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1381,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,66],"tags":[68,16],"class_list":["post-1382","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2j","tag-lgmd2j-titinopathy","tag-united-states"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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