{"id":2361,"date":"2019-01-15T10:00:27","date_gmt":"2019-01-15T16:00:27","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2361"},"modified":"2019-01-15T10:00:27","modified_gmt":"2019-01-15T16:00:27","slug":"individual-with-lgmd-andrea","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2019\/01\/15\/individual-with-lgmd-andrea\/","title":{"rendered":"OSOBA Z LGMD: Andrea"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

LGMD \"WYWIAD W \u015aWIETLE REFLEKTOR\u00d3W\"<\/strong><\/p>\n\n\n\n

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

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

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

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

Zdiagnozowano mnie w wieku 11 lat.<\/p>\n\n\n\n

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

W wieku 8 lat nie mog\u0142em sta\u0107 z pi\u0119tami na ziemi i wkr\u00f3tce\ni wkr\u00f3tce potem zacz\u0105\u0142em chodzi\u0107 na palcach. Wkr\u00f3tce potem os\u0142ab\u0142y moje ramiona i biodra.\nnast\u0119pnie.<\/p>\n\n\n\n

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

Nie, jestem jedynym cz\u0142onkiem rodziny, u kt\u00f3rego zdiagnozowano LGMD.<\/p>\n\n\n\n

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

Brak mo\u017cliwo\u015bci korzystania z Ubera!<\/p>\n\n\n\n

Post\u0119puj\u0105cy charakter choroby stanowi wyzwanie. Musia\u0142em\nmusia\u0142em dostosowa\u0107 si\u0119 do utraty pewnych zdolno\u015bci w miar\u0119 up\u0142ywu czasu i trudno jest\nwiedz\u0105c, \u017ce te straty b\u0119d\u0105 post\u0119powa\u0107. Na przyk\u0142ad, jako dziecko mog\u0142em chodzi\u0107,\nU\u017cywa\u0142em Segwaya do poruszania si\u0119 w okresie nastoletnim, a teraz u\u017cywam w\u00f3zka inwalidzkiego.\nw\u00f3zka inwalidzkiego. Dla mnie najtrudniejszym dostosowaniem by\u0142o to, \u017ce nie mog\u0142em ju\u017c\nodwiedzania dom\u00f3w przyjaci\u00f3\u0142, poniewa\u017c prawie zawsze maj\u0105 one schody, a tak\u017ce brak mo\u017cliwo\u015bci\nnie jestem ju\u017c w stanie gra\u0107 na instrumentach muzycznych, kt\u00f3re kiedy\u015b lubi\u0142em.<\/p>\n\n\n\n

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

Czuj\u0119 si\u0119 szcz\u0119\u015bliwa, \u017ce na studiach znalaz\u0142am kierunek, kt\u00f3ry mnie pasjonuje i kt\u00f3ry mog\u0119 realizowa\u0107 z LGMD. Jestem z siebie dumna, \u017ce przeprowadzi\u0142am si\u0119 do nowego stanu, aby uko\u0144czy\u0107 studia biostatystyczne i \u017cy\u0107 niezale\u017cnie. Ale kurs<\/g> kilka os\u00f3b pomog\u0142o mi po drodze (kocham ci\u0119 mamo i tata <\/g>:<\/g>).<\/p>\n\n\n\n

W jaki spos\u00f3b LGMD wp\u0142yn\u0119\u0142o na to, \u017ce sta\u0142e\u015b si\u0119\nosob\u0105, kt\u00f3r\u0105 jeste\u015b dzisiaj:<\/strong><\/p>\n\n\n\n

Czasami \u017cycie stawia przed nami wyzwania, kt\u00f3rych nie mo\u017cemy zmieni\u0107,\nale proces radzenia sobie z tymi wyzwaniami mo\u017ce by\u0107 cz\u0119sto bardzo satysfakcjonuj\u0105cy.\n\u017bycie z LGMD uczyni\u0142o mnie silniejsz\u0105 osob\u0105 na wiele sposob\u00f3w, pomimo fizycznej s\u0142abo\u015bci.\npomimo fizycznej s\u0142abo\u015bci. Nauczy\u0142o mnie r\u00f3wnie\u017c, jak wa\u017cna jest wra\u017cliwo\u015b\u0107 i przyjmowanie\nsmutku, aby w pe\u0142ni do\u015bwiadczy\u0107 rado\u015bci. W\u0142a\u015bciwie to mo\u017ce film \"Inside Out\" mnie tego nauczy\u0142.\nmnie tego...<\/p>\n\n\n\n

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

Ka\u017cdy powinien obejrze\u0107 TED Talk Stelli Young zatytu\u0142owany \"I am\nnie jestem twoj\u0105 inspiracj\u0105, dzi\u0119kuj\u0119 bardzo\". Dzieli si\u0119 ona wspania\u0142ym przes\u0142aniem na temat\nwykorzystywania os\u00f3b niepe\u0142nosprawnych. Wierz\u0119, \u017ce zdecydowana wi\u0119kszo\u015b\u0107\nz nas na tej ziemi robi wszystko, co w naszej mocy, pomimo r\u00f3\u017cnych traum, kt\u00f3re przeszli\u015bmy.\nprze\u017cyli\u015bmy. Dla tych z nas, kt\u00f3rzy s\u0105 niepe\u0142nosprawni fizycznie, ta trauma jest\nbardziej widoczna go\u0142ym okiem.<\/p>\n\n\n\n

Gdyby jutro mo\u017cna by\u0142o \"wyleczy\u0107\" chorob\u0119 LGMD, co\nby\u0142oby pierwsz\u0105 rzecz\u0105, kt\u00f3r\u0105 chcia\u0142by\u015b zrobi\u0107<\/strong>:<\/p>\n\n\n\n

To pytanie jest dla mnie najtrudniejsze. Nigdy nie by\u0142em\nnigdy nie by\u0142em zazdrosny o ludzi biegaj\u0105cych, w\u0119druj\u0105cych lub chodz\u0105cych na si\u0142owni\u0119. Prawdopodobnie\nprawdopodobnie po prostu chodzi\u0142bym do szko\u0142y, ale u\u017cywa\u0142bym schod\u00f3w zamiast windy. Ale\nto nudna odpowied\u017a. Mo\u017ce by\u0142bym bardziej dramatyczny; sprzeda\u0142bym sw\u00f3j w\u00f3zek inwalidzki\ni wykorzysta\u0107 pieni\u0105dze, by zabra\u0107 rodzin\u0119 do Europy. Mo\u017cliwo\u015b\u0107 skorzystania z toalety\nw samolocie mog\u0142aby by\u0107 ekscytuj\u0105ca. Ale t\u0119skni\u0142bym za specjalnym traktowaniem, kt\u00f3re wi\u0105\u017ce si\u0119\nz u\u017cywaniem w\u00f3zka inwalidzkiego. Bycie innym ma swoje zalety.<\/p>\n\n\n\n

*** Prosimy o LIKE, KOMENTARZ i UDOST\u0118PNIENIE tego postu, aby pom\u00f3c podnie\u015b\u0107\n\u015bwiadomo\u015bci na temat LGMD!<\/p>\n\n\n\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 pod adresem https:\/\/www.lgmd-info.org\/spotlight-interviews <\/a><\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name:  Andrea  Age: 24 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":2360,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-2361","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: Andrea - 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\/2019\/01\/15\/individual-with-lgmd-andrea\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Andrea - 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