{"id":2727,"date":"2019-06-12T14:29:32","date_gmt":"2019-06-12T19:29:32","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2727"},"modified":"2019-06-12T14:29:32","modified_gmt":"2019-06-12T19:29:32","slug":"individual-with-lgmd-jillena","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2019\/06\/12\/individual-with-lgmd-jillena\/","title":{"rendered":"OSOBA Z LGMD: Jillena"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

LGMD\n\"Wywiad w \u015bwietle reflektor\u00f3w\"<\/strong><\/p>\n\n\n\n

Nazwa<\/strong>: Jillena\n Wiek<\/strong>: 32 lata<\/p>\n\n\n\n

Kraj<\/strong>: Stany Zjednoczone\nStany<\/p>\n\n\n\n

Podtyp LGMD<\/strong>: LGMD2A - posta\u0107 kalpainopatii<\/p>\n\n\n\n

W JAKIM WIEKU ZOSTA\u0141E\u015a ZDIAGNOZOWANY? <\/strong>:<\/p>\n\n\n\n

Pocz\u0105tkowo zdiagnozowano u mnie LGMD w wieku 21 lat.\nw wieku 21 lat. Kilka miesi\u0119cy temu otrzyma\u0142em genetyczne\ngenetyczne potwierdzenie podtypu LGMD2A kilka miesi\u0119cy temu.<\/p>\n\n\n\n

JAKIE BY\u0141Y PIERWSZE OBJAWY <\/strong>:<\/p>\n\n\n\n

Po urodzeniu drugiego dziecka zacz\u0119\u0142am\nzauwa\u017cy\u0107, \u017ce schody sta\u0142y si\u0119 dla mnie trudne. W rzeczywisto\u015bci, zacz\u0119\u0142am si\u0119 po nich czo\u0142ga\u0107. I\nMia\u0142am skolioz\u0119, wi\u0119c przypisywa\u0142am moje trudno\u015bci z chodzeniem po schodach skoliozie.\nAle potem urodzi\u0142am drugie dziecko i nie mog\u0142am \u0142atwo podnie\u015b\u0107 nogi do kraw\u0119\u017cnika.\n\u0142atwo. Poza tym zawsze by\u0142am chuda i\nzawsze by\u0142am chuda i nigdy nie wiedzia\u0142am dlaczego. Moja mama obawia\u0142a si\u0119, \u017ce co\u015b jest nie tak i przekona\u0142a mnie do wizyty u lekarza.\nlekarza.<\/p>\n\n\n\n

CZY MASZ INNYCH CZ\u0141ONK\u00d3W RODZINY, KT\u00d3RZY\nMAJ\u0104 LGMD:<\/strong><\/p>\n\n\n\n

U nikogo w mojej rodzinie nie zdiagnozowano LGMD, ale moja mama mia\u0142a brata, kt\u00f3ry by\u0142 niepe\u0142nosprawny fizycznie. Uwa\u017camy, \u017ce cierpia\u0142 na dystrofi\u0119 mi\u0119\u015bniow\u0105 Duchenne'a.<\/p>\n\n\n\n

CO UWA\u017bASZ ZA NAJWI\u0118KSZE\nWYZWANIA W \u017bYCIU Z LGMD <\/strong>:<\/p>\n\n\n\n

Pierwsz\u0105 rzecz\u0105 jest walka, przez kt\u00f3r\u0105 musi przej\u015b\u0107 moja rodzina.\nnie musieliby, gdybym nie mia\u0142 tej choroby. Po drugie, fakt, \u017ce nie mog\u0119 po prostu i\u015b\u0107, i\u015b\u0107, i\u015b\u0107 jak kiedy\u015b.\njak kiedy\u015b. Moje r\u0119ce i nogi s\u0105 s\u0142absze, co sprawia, \u017ce wykonywanie wielu czynno\u015bci jest dla mnie wyczerpuj\u0105ce.<\/p>\n\n\n\n

JAKIE JEST TWOJE NAJWI\u0118KSZE OSI\u0104GNI\u0118CIE? <\/strong>:<\/p>\n\n\n\n

Moim najwi\u0119kszym osi\u0105gni\u0119ciem jest ostatnia zmiana nastawienia. I\nzda\u0142em sobie spraw\u0119, \u017ce negatywne nastawienie do mojej choroby i przeznaczenia nikomu nie pomaga. Nie tylko zdecydowa\u0142em si\u0119 \u017cy\u0107, patrz\u0105c na \u017cycie\nprzez inn\u0105 par\u0119 okular\u00f3w, ale zdecydowa\u0142em si\u0119 r\u00f3wnie\u017c podzieli\u0107 tymi\nokularami ze \u015bwiatem poprzez moj\u0105 \u017cyciow\u0105 podr\u00f3\u017c na stworzonej przeze mnie stronie na Facebooku.<\/p>\n\n\n\n

JAK LGMD WP\u0141YN\u0118\u0141O NA TO, \u017bE\nSTAJ\u0104C SI\u0118 OSOB\u0104, KT\u00d3R\u0104 JESTE\u015a DZISIAJ:<\/strong><\/p>\n\n\n\n

Kiedy ju\u017c zaakceptowa\u0142em, \u017ce mam t\u0119 chorob\u0119\ni nie musia\u0142am by\u0107 nieszcz\u0119\u015bliwa, za\u0142o\u017cy\u0142am stron\u0119 na Facebooku. Zacz\u0105\u0142em udziela\u0107 porad, jak by\u0107\npozytywne. Od tego czasu sta\u0142o si\u0119 to czym\u015b wi\u0119cej. Mam teraz tak wielu przyjaci\u00f3\u0142 na Facebooku\nkt\u00f3rzy stali si\u0119 niesamowitym systemem wsparcia. Ponadto podzieli\u0142em si\u0119 swoj\u0105 histori\u0105 podczas przem\u00f3wienia na Shamrock\ndla MDA. Rozkwit\u0142em\nw osob\u0119, kt\u00f3ra po prostu chce, aby wszyscy widzieli swoj\u0105 warto\u015b\u0107! Dziesi\u0119\u0107 lat temu nie\no siebie - nie m\u00f3wi\u0105c ju\u017c o kimkolwiek innym.<\/p>\n\n\n\n

CO CHCESZ, ABY WIEDZIA\u0141 \u015aWIAT\nO LGMD <\/strong>:<\/p>\n\n\n\n

Chc\u0119, aby \u015bwiat dowiedzia\u0142 si\u0119, \u017ce LGMD jest niezwykle trudn\u0105 chorob\u0105.\nz kt\u00f3r\u0105 trudno sobie poradzi\u0107, poniewa\u017c odbiera niezale\u017cno\u015b\u0107. Wraz z wiekiem\nmi\u0119\u015bnie s\u0142abn\u0105, co zmniejsza mobilno\u015b\u0107. To trudne,\nzw\u0142aszcza gdy ma si\u0119 tr\u00f3jk\u0119 dzieci do biegania.<\/p>\n\n\n\n

GDYBY TWOJA LGMD MOG\u0141A ZOSTA\u0106 \"WYLECZONA\"\nJAKA BY\u0141ABY PIERWSZA RZECZ, KT\u00d3R\u0104 CHCIA\u0141BY\u015a ZROBI\u0106 JUTRO? <\/strong>:<\/p>\n\n\n\n

Wybra\u0142bym si\u0119 na w\u0119dr\u00f3wk\u0119\nw g\u00f3ry Kolorado z moj\u0105 rodzin\u0105!<\/p>\n\n\n\n

* * * Aby przeczyta\u0107 wi\u0119cej wywiad\u00f3w \"LGMD Spotlight Interviews\" lub zg\u0142osi\u0107 si\u0119 na ochotnika do udzia\u0142u w nadchodz\u0105cym wywiadzie, odwied\u017a nasz\u0105 stron\u0119 internetow\u0105 pod adresem https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSpotlight interview\u201d Name:  Jillena  Age: 32 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":2728,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-2727","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a-calpainopathy-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Jillena - 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\/2019\/06\/12\/individual-with-lgmd-jillena\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Jillena - 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