{"id":1059,"date":"2015-11-30T11:36:31","date_gmt":"2015-11-30T17:36:31","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1059"},"modified":"2015-11-30T11:36:31","modified_gmt":"2015-11-30T17:36:31","slug":"molly","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2015\/11\/30\/molly\/","title":{"rendered":"OSOBA Z LGMD: Molly"},"content":{"rendered":"<p>11\/30\/2015<\/p>\n<p><strong>NAZWA<\/strong>:  Molly\u00a0\u00a0 <strong>\u00a0WIEK<\/strong>29 lat<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2015\/11\/LGMD2B-Molly.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1060 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\/2015\/11\/LGMD2B-Molly-300x169.png\" alt=\"LGMD2B - Molly\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>KRAJ:<\/strong>\u00a0 Stany Zjednoczone<\/p>\n<p><strong>Podtyp LGMD<\/strong>:   LGMD2B: dysferlinopatia\/miopatia Miyoshi<\/p>\n<p>&nbsp;<\/p>\n<p><strong>W jakim wieku zosta\u0142e\u015b zdiagnozowany?<\/strong>:<\/p>\n<p>Zacz\u0105\u0142em wykazywa\u0107 objawy w wieku 17 lat i wtedy powiedziano mi, \u017ce cierpi\u0119 na Guillain-Barre. Kiedy mia\u0142em 19 lat, moje pocz\u0105tkowe objawy powr\u00f3ci\u0142y i pogorszy\u0142y si\u0119, jednak tym razem zdiagnozowano u mnie zapalenie wielomi\u0119\u015bniowe.  Po 3 latach sp\u0119dzonych w szpitalu i poza nim, w wieku 22 lat, dzi\u0119ki testom DNA zdiagnozowano u mnie miopati\u0119 Miyoshi.<\/p>\n<p><strong>Jakie by\u0142y pierwsze objawy?<\/strong>:<\/p>\n<p>Moimi pierwszymi objawami by\u0142y trudno\u015bci z chodzeniem po schodach i wstawaniem z krzese\u0142. Zauwa\u017cy\u0142em znaczny spadek aktywno\u015bci sportowej w wieku oko\u0142o 15 lat, ale zrzuci\u0142em to na karb nastoletniego lenistwa. Dopiero, gdy by\u0142em m\u0142odszy w liceum i nie mog\u0142em uko\u0144czy\u0107 zaj\u0119\u0107 wychowania fizycznego i zacz\u0105\u0142em cz\u0119sto upada\u0107, wiedzia\u0142em, \u017ce jest problem.<\/p>\n<p><strong>Czy masz innych cz\u0142onk\u00f3w rodziny cierpi\u0105cych na LGMD?<\/strong><\/p>\n<p>Nie mam innych cz\u0142onk\u00f3w rodziny dotkni\u0119tych LGMD.<\/p>\n<p><strong>Co uwa\u017casz za najwi\u0119ksze wyzwanie w \u017cyciu z LGMD?<\/strong>:<\/p>\n<p>Jednym z najwi\u0119kszych wyzwa\u0144 jest obserwowanie, jak przyjaciele i rodzina uczestnicz\u0105 w aktywno\u015bciach fizycznych, takich jak bieganie, w\u0119dr\u00f3wki, codzienne \u0107wiczenia, a nawet taniec. Smutno mi, \u017ce nie mog\u0119 uczestniczy\u0107 w tym razem z nimi i czasami czuj\u0119, \u017ce trac\u0119 czas. Inn\u0105, by\u0107 mo\u017ce trudniejsz\u0105 walk\u0105 jest codzienna walka, kt\u00f3ra wymaga znacznie wi\u0119cej wysi\u0142ku, aby przygotowa\u0107 si\u0119 ka\u017cdego ranka, a tak\u017ce wykona\u0107 codzienne zadania, kt\u00f3re wielu uwa\u017ca za oczywiste, takie jak sprz\u0105tanie pokoju, sprz\u0105tanie domu, pranie itp. Musia\u0142em nauczy\u0107 si\u0119 odk\u0142ada\u0107 dum\u0119 na bok i bardziej polega\u0107 na przyjacio\u0142ach i rodzinie, co samo w sobie jest wyzwaniem.<\/p>\n<p><strong>Jakie jest twoje najwi\u0119ksze osi\u0105gni\u0119cie?<\/strong>:<\/p>\n<p>My\u015bl\u0119, \u017ce moim najwi\u0119kszym osi\u0105gni\u0119ciem do tej pory jest to, \u017ce pomimo przebywania w szpitalu i poza nim podczas studi\u00f3w, nadal pracowa\u0142em i ostatecznie uzyska\u0142em stopie\u0144 naukowy. Teraz codziennie wykorzystuj\u0119 ten dyplom jako nauczyciel. Nauczanie zawsze by\u0142o moim marzeniem i uda\u0142o mi si\u0119 je spe\u0142ni\u0107. Moi uczniowie i koledzy bardzo mnie wspieraj\u0105, co sprawia, \u017ce ka\u017cdego dnia jest warto.<\/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>LGMD uczyni\u0142o mnie bardziej \u015bwiadom\u0105 osob\u0105. Celow\u0105, je\u015bli chodzi o moje w\u0142asne \u017cycie, ale tak\u017ce celow\u0105, je\u015bli chodzi o to, kim si\u0119 otaczam. Kiedy \u017cyjesz z chorob\u0105, kt\u00f3ra wp\u0142ywa na twoje codzienne \u017cycie, wa\u017cne jest, aby otacza\u0107 si\u0119 lud\u017ami i zaj\u0119ciami, kt\u00f3re maj\u0105 znaczenie i wype\u0142niaj\u0105 twoje \u017cycie, a nie marnowa\u0107 czas na co\u015b drobnego i nieistotnego.   Nie jestem pewien, czy zda\u0142bym sobie z tego spraw\u0119 tak wcze\u015bnie, gdyby nie to, czego do\u015bwiadczam ka\u017cdego dnia.<\/p>\n<p><strong>Co chcia\u0142by\u015b, aby \u015bwiat dowiedzia\u0142 si\u0119 o LGMD?<\/strong>:<\/p>\n<p>Przede wszystkim chc\u0119, aby wszyscy przestali my\u015ble\u0107, \u017ce mam jak\u0105\u015b dziwn\u0105 form\u0119 stwardnienia rozsianego. Chc\u0119 r\u00f3wnie\u017c, aby wszyscy wiedzieli, \u017ce jako spo\u0142eczno\u015b\u0107 jeste\u015bmy warto\u015bciowi i mamy wiele do zaoferowania. Nasze cia\u0142a mog\u0105 z nami nie wsp\u00f3\u0142pracowa\u0107, ale jeste\u015bmy bardzo bystr\u0105 i pe\u0142n\u0105 pasji spo\u0142eczno\u015bci\u0105. Chcia\u0142bym r\u00f3wnie\u017c, aby \u015bwiat wiedzia\u0142, \u017ce LGMD istnieje, ale my\u015bl\u0119, \u017ce robimy wielkie post\u0119py w tej dziedzinie.<\/p>\n<p>&nbsp;<\/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>Jest tak wiele rzeczy, kt\u00f3re chcia\u0142bym zrobi\u0107 i oczywi\u015bcie wi\u0119kszo\u015b\u0107 z nich wi\u0105\u017ce si\u0119 ze zdolno\u015bciami fizycznymi, kt\u00f3rych nie posiadam. Chcia\u0142abym przej\u015b\u0107 Szlak Appalach\u00f3w lub cokolwiek innego, co wi\u0105\u017ce si\u0119 z przebywaniem na zewn\u0105trz przez d\u0142u\u017cszy czas. O, i chcia\u0142bym te\u017c znowu skaka\u0107, jest w tym co\u015b uwalniaj\u0105cego.<\/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: https:\/\/www.lgmd-info.org\/spotlight-interviews.<\/p>","protected":false},"excerpt":{"rendered":"<p>11\/30\/2015 NAME:\u00a0 Molly\u00a0\u00a0 \u00a0AGE: 29 years old COUNTRY:\u00a0 United States [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1060,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[21,23,55,16],"class_list":["post-1059","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-dysferlinopathy","tag-lgmd2b","tag-miyoshi-myopathy","tag-united-states"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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