{"id":2697,"date":"2019-04-01T16:00:07","date_gmt":"2019-04-01T21:00:07","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2697"},"modified":"2019-04-01T16:00:07","modified_gmt":"2019-04-01T21:00:07","slug":"individual-with-lgmd-tasha","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2019\/04\/01\/individual-with-lgmd-tasha\/","title":{"rendered":"OSOBA Z LGMD: Tasha"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

\"LGMD Spotlight\nWywiad\"<\/strong><\/p>\n\n\n\n

Imi\u0119 i nazwisko:<\/strong>  Tasha                 Wiek<\/strong>: 27<\/p>\n\n\n\n

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

Podtyp LGMD: LGMD2B<\/p>\n\n\n\n

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

Zdiagnozowano mnie w wieku 12 lat. By\u0142em 6th<\/sup> r\u00f3wniarka w\nw tym czasie w szkole podstawowej.<\/p>\n\n\n\n

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

Najwcze\u015bniejsze objawy wyst\u0105pi\u0142y, gdy by\u0142em ma\u0142ym dzieckiem. Jak wyja\u015bni\u0142a moja mama\nt\u0142umaczy\u0142a, potyka\u0142em si\u0119 o \u017ad\u017ab\u0142o trawy i upada\u0142em. Naprawd\u0119 zauwa\u017cyli\u015bmy\nzauwa\u017cyli\u015bmy, \u017ce co\u015b jest nie tak, gdy gra\u0142em w softball i nie mog\u0142em dobrze biega\u0107. Mog\u0142em\nodchyla\u0107 ramiona do ty\u0142u, wystawia\u0107 brzuch i biega\u0107 na palcach. Do tego\notrzyma\u0142am przydomek \"Twinkle toes\". Zauwa\u017cyli\u015bmy r\u00f3wnie\u017c, \u017ce moje prawe rami\u0119\nnie prostowa\u0142a si\u0119 do ko\u0144ca w \u0142okciu.<\/p>\n\n\n\n

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

Jestem jedyn\u0105 osob\u0105, u kt\u00f3rej zdiagnozowano LGMD. Mam\nmam nadziej\u0119, \u017ce nikt inny te\u017c nie b\u0119dzie mia\u0142 tej choroby. <\/p>\n\n\n\n

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

Najwi\u0119kszym wyzwaniem w \u017cyciu z LGMD jest mobilno\u015b\u0107. Do\n21 roku \u017cycia mog\u0142em bez trudu wbiec po schodach, a nawet\na nawet pomin\u0105\u0107 kilka po drodze. Wydawa\u0142o si\u0119, \u017ce gdy sko\u0144czy\u0142em 20 lat, moje objawy sta\u0142y si\u0119\nwyra\u017anie si\u0119 pogorszy\u0142y. Teraz mam 27 lat i zmagam si\u0119 z nier\u00f3wnymi powierzchniami, schodami i cz\u0119stymi upadkami.\ni cz\u0119stymi upadkami. Je\u015bli na schodach nie ma por\u0119czy, musz\u0119 si\u0119 po nich czo\u0142ga\u0107.\nmusz\u0119 si\u0119 po nich czo\u0142ga\u0107. Je\u015bli powierzchnia do chodzenia jest lekko nachylona, to\nchodz\u0119 z wyprostowanymi nogami w bardzo wolnym tempie. Niestety, schody\nNiestety, schody wywo\u0142uj\u0105 u mnie niepok\u00f3j w miejscach publicznych. Za wszelk\u0105 cen\u0119 staram si\u0119 unika\u0107 schod\u00f3w w miejscach publicznych.\npublicznych. Kupi\u0142em dom 4 lata temu i specjalnie kupi\u0142em dom ze schodami.\ndomu. W ten spos\u00f3b mog\u0119 nadal mie\u0107 schody w zaciszu w\u0142asnego domu\ni nadal anga\u017cuj\u0119 si\u0119 w chodzenie po schodach w moim codziennym \u017cyciu. Moje najwi\u0119ksze wyzwanie\nze schodami w moim domu jest jednak pr\u00f3ba wniesienia kosza z praniem po schodach.\npo schodach. Zmodyfikowa\u0142em spos\u00f3b, w jaki to robi\u0119. Padam na kolana i podnosz\u0119 kosz\nkosz po jednym stopniu na raz (wydaje mi si\u0119, \u017ce to dzia\u0142a najlepiej). Jedn\u0105 rzecz\u0105, kt\u00f3r\u0105\ndenerwujemy si\u0119, co si\u0119 stanie, gdy zdecydujemy si\u0119 stara\u0107 o dzieci.\nstara\u0107 si\u0119 o dzieci. Wiem, \u017ce moje objawy mog\u0105 si\u0119 nasili\u0107 i \u017ce noszenie dziecka po schodach\nnoszenie dziecka po schodach nie jest idealnym rozwi\u0105zaniem. Mam r\u00f3wnie\u017c trudno\u015bci ze wstawaniem z\nniskich krzese\u0142 lub kanap. <\/p>\n\n\n\n

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

Moim najwi\u0119kszym osi\u0105gni\u0119ciem by\u0142o uko\u0144czenie studi\u00f3w piel\u0119gniarskich.\nstopnia. Wszyscy wiemy, jak bardzo jeste\u015bmy zaj\u0119ci jako piel\u0119gniarki i jestem bardzo wdzi\u0119czna, \u017ce mog\u0119\n\u017ce mog\u0119 nadal pracowa\u0107 jako piel\u0119gniarka na pi\u0119trze, co pozwala mi by\u0107 aktywn\u0105 w LGMD.\nMam przyjemno\u015b\u0107 pracowa\u0107 na oddziale rehabilitacji, gdzie mog\u0119 pomaga\u0107 innym\nz niepe\u0142nosprawno\u015bci\u0105 i mog\u0119 odnosi\u0107 si\u0119 do nich na wiele sposob\u00f3w.<\/p>\n\n\n\n

Chcia\u0142abym r\u00f3wnie\u017c wspomnie\u0107, \u017ce znalaz\u0142am wspania\u0142ego m\u0119\u017ca o imieniu Tony.\nm\u0119\u017ca o imieniu Tony. Stara si\u0119 pom\u00f3c mi z diet\u0105, \u0107wiczeniami i poradami zdrowotnymi\naby utrzyma\u0107 moj\u0105 wag\u0119. Po\u015bwi\u0119ca r\u00f3wnie\u017c czas na badanie MD i tego, co mo\u017cemy zrobi\u0107, aby spowolni\u0107 post\u0119p choroby.\nzrobi\u0107, aby spowolni\u0107 post\u0119p choroby. Zawsze jest przy mnie, by poda\u0107 mi r\u0119k\u0119 lub pom\u00f3c\nmi wej\u015b\u0107 po schodach, gdy tego potrzebuj\u0119. Nigdy nie narzeka na konieczno\u015b\u0107 noszenia\npranie po schodach lub wybra\u0142 inn\u0105 tras\u0119 podczas spaceru ze mn\u0105. I\nnaprawd\u0119 jestem b\u0142ogos\u0142awiona, \u017ce go mam!<\/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

LGMD naprawd\u0119 ukszta\u0142towa\u0142o mnie na osob\u0119, kt\u00f3r\u0105 sta\u0142em si\u0119\ndzisiaj. Chcia\u0142bym powiedzie\u0107, \u017ce dzi\u0119ki temu sta\u0142em si\u0119 pokorniejszy. Zawsze powtarzam, \u017ce gdybym\nnigdy nie zdiagnozowano LGMD, prawdopodobnie by\u0142bym kim\u015b, kto my\u015bli, \u017ce mo\u017ce\n\u017ce mo\u017ce uprawia\u0107 ka\u017cdy sport, osi\u0105gn\u0105\u0107 ka\u017cdy cel, kt\u00f3ry wydaje si\u0119 niemo\u017cliwy i by\u0107 osob\u0105, kt\u00f3ra\nskoncentrowan\u0105 na sobie. Maj\u0105c LGMD musz\u0119 by\u0107 silna ka\u017cdego dnia. Dotyczy to nie tylko\nnie tylko fizycznie, ale tak\u017ce psychicznie. W pewnym sensie uczyni\u0142o mnie to bardziej upartym\nponiewa\u017c staram si\u0119 robi\u0107 rzeczy samodzielnie, dop\u00f3ki nie potrzebuj\u0119 pomocy kogo\u015b innego.\nCzuj\u0119, \u017ce bycie RN z MD to \u015bwietny spos\u00f3b na pokazanie moim pacjentom, \u017ce bez wzgl\u0119du na to\nbez wzgl\u0119du na to, co rzuca na ciebie \u017cycie, nie jest to koniec \u015bwiata; modyfikacje\ntrzeba tylko wprowadzi\u0107 modyfikacje. Mocno wierz\u0119, \u017ce posiadanie MD sprawi\u0142o, \u017ce bardziej polegam na moim Ojcu Niebieskim.\nOjcu Niebieskiemu. Modl\u0105c si\u0119, aby mnie uzdrowi\u0142, modl\u0119 si\u0119 r\u00f3wnie\u017c, aby mnie wykorzysta\u0142\nw docieraniu do innych os\u00f3b z LGMD. Wszyscy znamy powiedzenie: \"Nie wiemy, jak silni jeste\u015bmy.\nsilni, dop\u00f3ki bycie silnym nie stanie si\u0119 nasz\u0105 jedyn\u0105 opcj\u0105\". Mog\u0119 powiedzie\u0107, \u017ce jest to \u015bwietny\nspos\u00f3b na prze\u017cycie ka\u017cdego dnia z LGMD. Musimy pozosta\u0107 silni, nawet gdy nasze mi\u0119\u015bnie nas zawodz\u0105.\nnas. <\/p>\n\n\n\n

Chc\u0119 r\u00f3wnie\u017c podzi\u0119kowa\u0107 mojej rodzinie i przyjacio\u0142om za ich cierpliwo\u015b\u0107 i mi\u0142o\u015b\u0107.\ncierpliwo\u015b\u0107 i mi\u0142o\u015b\u0107, kt\u00f3r\u0105 mnie obdarzaj\u0105. Zawsze szybko pomagaj\u0105 i zawsze anga\u017cuj\u0105\nmnie we wszystko. Jedn\u0105 z fajnych rzeczy, z kt\u00f3rych \u017cartujemy, \u017ce mam MD, jest to\npowiedzenie (zw\u0142aszcza gdy upadam lub potykam si\u0119). \"Och, m\u00f3j MD zaczyna dzia\u0142a\u0107!\".<\/p>\n\n\n\n

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

Chcia\u0142bym, aby \u015bwiat wiedzia\u0142, \u017ce jeste\u015bmy lud\u017ami, tak jak wszyscy inni.\ninni. Mo\u017cemy zrobi\u0107 dok\u0142adnie to samo, co kto\u015b bez MD, jednak musimy to tylko\nmusimy tylko to zmodyfikowa\u0107 i nie spieszy\u0107 si\u0119 z tym. My\u015blenie \u017cyczeniowe to nadzieja, \u017ce nikt nie b\u0119dzie\nnikt nie b\u0119dzie na nas patrzy\u0142 i zastanawia\u0142 si\u0119, co jest nie tak, jednak by\u0142oby mi\u0142o. Chcia\u0142bym\nChcia\u0142bym zasugerowa\u0107 tym, kt\u00f3rzy nie wiedz\u0105 zbyt wiele o MD, \u017ce nigdy nie wiadomo, z czym kto\u015b si\u0119 zmaga.\nz czym kto\u015b si\u0119 zmaga. Zamiast powodowa\u0107 wi\u0119cej b\u00f3lu i krzywdy\nby\u0107 ich s\u0142o\u0144cem w pochmurny dzie\u0144.<\/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

Zawsze powtarzam, \u017ce pierwsz\u0105 rzecz\u0105, jak\u0105 zrobi\u0119, gdy znajd\u0119 si\u0119 w niebie lub gdy\nnieba lub wylecz\u0119 LGMD, b\u0119dzie bieganie tak szybko, jak tylko potrafi\u0119. Mo\u017cliwo\u015b\u0107 przebiegni\u0119cia zaledwie mili\ni s\u0142ucha\u0107 muzyki, obserwuj\u0105c krajobrazy, by\u0142aby idealna. <\/p>\n\n\n\n

*** Prosimy o LIKE, COMMENT i SHARE tego postu, aby pom\u00f3c zwi\u0119kszy\u0107 \u015bwiadomo\u015b\u0107\no LGMD!<\/p>\n\n\n\n

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

\u201cLGMD Spotlight Interview\u201d Name:  Tasha                 Age: 27 Country: United States […]<\/p>","protected":false},"author":1,"featured_media":2698,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[87],"class_list":["post-2697","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2b-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Tasha - 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\/04\/01\/individual-with-lgmd-tasha\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Tasha - 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