{"id":701,"date":"2015-05-21T11:57:37","date_gmt":"2015-05-21T16:57:37","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=701"},"modified":"2015-05-21T11:57:37","modified_gmt":"2015-05-21T16:57:37","slug":"andrea","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2015\/05\/21\/andrea\/","title":{"rendered":"OSOBA Z LGMD: Andrea"},"content":{"rendered":"

05\/21\/2015:<\/p>\n

 <\/p>\n

Imi\u0119 i nazwisko:<\/strong>\u00a0 Andrea \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Wiek<\/strong>: 17 lat\"LGMD1B<\/a><\/p>\n

Kraj<\/strong>: Norwegia<\/p>\n

Podtyp LGMD<\/strong>: LGMD 1B \/ Laminopatia<\/p>\n

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

Mia\u0142em oko\u0142o 6 miesi\u0119cy, kiedy odkryto, \u017ce co\u015b jest nie tak, ale dopiero gdy mia\u0142em oko\u0142o 2 lat, zdecydowano, \u017ce to dystrofia mi\u0119\u015bniowa. Prawdopodobnie cierpi\u0119 na t\u0119 chorob\u0119 przez ca\u0142e \u017cycie. Mia\u0142em 7 lat, kiedy zdiagnozowano u mnie LGMD 1B.<\/p>\n

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

Nie mog\u0142em utrzyma\u0107 g\u0142owy w g\u00f3rze, kiedy zacz\u0105\u0142em samodzielnie siedzie\u0107.<\/p>\n

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

Nie, jestem jedyn\u0105 osob\u0105 z LGMD w mojej rodzinie. Oboje moi rodzice zostali przebadani, a wyniki wykaza\u0142y, \u017ce nie odziedziczy\u0142em tej choroby, lecz jest ona wynikiem mutacji.<\/p>\n

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

Najwi\u0119kszym wyzwaniem jest to, \u017ce nie mog\u0119 nic zrobi\u0107 samodzielnie. Potrzebuj\u0119 pomocy praktycznie we wszystkim, jak ubieranie si\u0119, wstawanie i wstawanie z \u0142\u00f3\u017cka czy podnoszenie rzeczy.<\/p>\n

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

Moim najwi\u0119kszym osi\u0105gni\u0119ciem jest m\u00f3j umys\u0142. To, jak pozytywnie patrz\u0119 na wszystko.<\/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

Pozwoli\u0142o mi to doceni\u0107 ma\u0142e przyjemno\u015bci i uczyni\u0142o mnie bardzo pozytywn\u0105 osob\u0105.<\/p>\n

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

Chc\u0119, aby \u015bwiat wiedzia\u0142, \u017ce nie jestem przykuty do w\u00f3zka inwalidzkiego, w\u00f3zek inwalidzki jest najbardziej pomocn\u0105 pomoc\u0105, jak\u0105 mam. Bez niego by\u0142bym przykuty, to moja wolno\u015b\u0107. Kiedy niekt\u00f3rzy ludzie mnie widz\u0105, widz\u0105 tylko w\u00f3zek inwalidzki, ha\u0142as wok\u00f3\u0142 mnie, a nie mnie. Choroba wp\u0142ywa tylko na moje mi\u0119\u015bnie, a nie na m\u00f3zg, jestem normaln\u0105 17-letni\u0105 dziewczyn\u0105.<\/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

Skaka\u0142em, biega\u0142em po schodach, podnosi\u0142em rzeczy, robi\u0142em wszystkie normalne rzeczy, kt\u00f3rych nigdy nie by\u0142em w stanie zrobi\u0107!<\/p>","protected":false},"excerpt":{"rendered":"

05\/21\/2015:   Name:\u00a0 Andrea \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Age: 17 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":702,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,44],"tags":[42,43,45],"class_list":["post-701","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd1b","tag-laminopathy","tag-lgmd1b","tag-norway"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Andrea<\/title>\n<meta name=\"description\" content=\"Andrea who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares her experience in living with this progressive neuro-muscular disease.\" \/>\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\/2015\/05\/21\/andrea\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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