{"id":414,"date":"2015-01-18T22:10:12","date_gmt":"2015-01-19T04:10:12","guid":{"rendered":"http:\/\/mainstay-bg.com\/wp\/?p=148"},"modified":"2015-01-18T22:10:12","modified_gmt":"2015-01-19T04:10:12","slug":"jessica","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2015\/01\/18\/jessica\/","title":{"rendered":"OSOBA Z LGMD: Jessica"},"content":{"rendered":"

01\/18\/2015:<\/p>\n

NAZWA<\/strong>: Jessica\u00a0\u00a0\u00a0\"LGMD2A<\/a> <\/span><\/p>\n

WIEK<\/strong>: 31
\n<\/span><\/p>\n

KRAJ<\/strong>: Stany Zjednoczone
\n<\/span><\/p>\n

Podtyp LGMD:<\/strong> LGMD2A \/ kalpainopatia<\/span><\/p>\n


\n<\/span>W JAKIM WIEKU ZOSTA\u0141E\u015a ZDIAGNOZOWANY?<\/strong>:<\/span><\/span>
\n\u00a0Dystrofi\u0119 mi\u0119\u015bniow\u0105 obr\u0119czy ko\u0144czyny zdiagnozowano u mnie w wieku 12 lat, ale podtyp 2A otrzyma\u0142em dopiero w wieku oko\u0142o 25 lat.<\/span><\/span><\/p>\n

JAKIE BY\u0141Y PIERWSZE OBJAWY<\/strong>:
\nOd pierwszych krok\u00f3w wykazywa\u0142em pewn\u0105 tendencj\u0119 do chodzenia na palcach, ale moim rodzicom powiedziano, \u017ce z tego wyrosn\u0119. Z czasem coraz trudniej by\u0142o mi sta\u0107 i chodzi\u0107 p\u0142asko, ale nie wykazywa\u0142em \u017cadnych innych objaw\u00f3w a\u017c do oko\u0142o 8 roku \u017cycia, kiedy zacz\u0105\u0142em mie\u0107 trudno\u015bci z chodzeniem po schodach, bieganiem i wykonywaniem \u0107wicze\u0144 na zaj\u0119ciach gimnastycznych oraz wstawaniem z pod\u0142ogi.<\/p>\n

CZY MASZ INNYCH CZ\u0141ONK\u00d3W RODZINY, KT\u00d3RZY CHORUJ\u0104 NA LGMD?<\/strong>:
\nNie, jestem jedyn\u0105 znan\u0105 osob\u0105 w mojej rodzinie, kt\u00f3ra \u017cyje z form\u0105 dystrofii mi\u0119\u015bniowej.<\/p>\n

CO UWA\u017bASZ ZA NAJWI\u0118KSZE WYZWANIE W \u017bYCIU Z LGMD?<\/strong>:
\nJestem wdzi\u0119czny, \u017ce istnieje wiele aspekt\u00f3w \u017cycia z LGMD, kt\u00f3re, dzi\u0119ki \u0142asce Bo\u017cej, z czasem zaakceptowa\u0142em i dostosowa\u0142em si\u0119 do nich, ale jednym z aspekt\u00f3w, z kt\u00f3rym wci\u0105\u017c si\u0119 zmagam, jest pragnienie wi\u0119kszej niezale\u017cno\u015bci i stopie\u0144, w jakim musz\u0119 polega\u0107 na innych w zakresie pomocy i wykonywania zwyk\u0142ych codziennych zada\u0144. Pragnienie i niezdolno\u015b\u0107 do wykonywania zada\u0144 jest jak sw\u0119dzenie, kt\u00f3rego nie mo\u017cna podrapa\u0107. Cz\u0119sto wymaga to ogromnej cierpliwo\u015bci, z kt\u00f3r\u0105 zwykle si\u0119 zmagam. Aby skomplikowa\u0107 spraw\u0119, nale\u017cy doda\u0107 do tego poczucie winy, kt\u00f3re czasami mo\u017cna odczuwa\u0107. Istnieje zar\u00f3wno rzeczywisto\u015b\u0107 w\u0142asnej ci\u0105g\u0142ej potrzeby pomocy ze strony innych, jak i rzeczywisto\u015b\u0107, w kt\u00f3rej osoby pe\u0142ni\u0105ce rol\u0119 opiekuna maj\u0105 w\u0142asne potrzeby, pragnienia, plany i ograniczenia, o kt\u00f3rych musz\u0119 pami\u0119ta\u0107 i kt\u00f3re musz\u0119 rozumie\u0107.<\/p>\n

JAKIE JEST TWOJE NAJWI\u0118KSZE OSI\u0104GNI\u0118CIE?<\/strong>:
\nMoim najwi\u0119kszym osi\u0105gni\u0119ciem jest uko\u0144czenie studi\u00f3w doktoranckich i uzyskanie tytu\u0142u doktora psychologii klinicznej.<\/p>\n

JAK CHOROBA ALZHEIMERA WP\u0141YN\u0118\u0141A NA TO, \u017bE STA\u0141E\u015a SI\u0118 OSOB\u0104, KT\u00d3R\u0104 JESTE\u015a DZISIAJ?<\/strong>:
\nB\u00f3g wykorzysta\u0142 moje \u017cycie z MD na wiele sposob\u00f3w. U\u017cy\u0142 go, by pokaza\u0107 mi, \u017ce Go potrzebuj\u0119, co zmieni\u0142o ca\u0142e moje \u017cycie. Mam teraz trwa\u0142y pok\u00f3j i rado\u015b\u0107 pomimo moich okoliczno\u015bci. \"Im s\u0142abiej si\u0119 czujemy, tym mocniej si\u0119 opieramy. A im mocniej si\u0119 opieramy, tym silniej wzrastamy duchowo, nawet gdy nasze cia\u0142a marniej\u0105\". (J.I. Packer) B\u00f3g pokaza\u0142 mi dzi\u0119ki temu wiele innych b\u0142ogos\u0142awie\u0144stw. Sta\u0142em si\u0119 kreatywny w rozwi\u0105zywaniu problem\u00f3w i nauczy\u0142em si\u0119 dostosowywa\u0107 do zmian. Wraz z wiekiem przenios\u0142em swoj\u0105 uwag\u0119 z aktywno\u015bci fizycznej na pog\u0142\u0119bianie relacji, odkrywanie sztuki i szczeg\u00f3lnie ci\u0119\u017ck\u0105 prac\u0119 nad nauk\u0105. Nawi\u0105za\u0142em przyja\u017anie na ca\u0142e \u017cycie z wieloma wyj\u0105tkowymi osobami niepe\u0142nosprawnymi. Ukierunkowa\u0142o to r\u00f3wnie\u017c moje dzia\u0142ania edukacyjne i zawodowe na pomoc innym w radzeniu sobie z niepe\u0142nosprawno\u015bci\u0105 w zdrowy spos\u00f3b.<\/p>\n

CO CHCIA\u0141BY\u015a, ABY \u015aWIAT DOWIEDZIA\u0141 SI\u0118 O LGMD?<\/strong>: LGMD to grupa zaburze\u0144 wp\u0142ywaj\u0105cych g\u0142\u00f3wnie na mi\u0119\u015bnie obr\u0119czy barkowej i miednicznej. Zidentyfikowano ponad 20 r\u00f3\u017cnych podtyp\u00f3w LGMD. LGMD mo\u017ce wygl\u0105da\u0107 inaczej w zale\u017cno\u015bci od r\u00f3\u017cnych czynnik\u00f3w, w tym takich jak specyficzne mutacje genetyczne, wiek wyst\u0105pienia, tempo progresji itp. Mo\u017cesz nawet nie by\u0107 w stanie stwierdzi\u0107, \u017ce kto\u015b cierpi na LGMD. Mo\u017cesz zobaczy\u0107 inn\u0105 osob\u0119 i pomy\u015ble\u0107, \u017ce po prostu chodzi inaczej lub wolniej. Inna osoba mo\u017ce potrzebowa\u0107 w\u00f3zka inwalidzkiego przez ca\u0142y czas. Nawet dwie osoby z tym samym podtypem choroby mog\u0105 wygl\u0105da\u0107 zupe\u0142nie inaczej. Staraj si\u0119 nie przyjmowa\u0107 za\u0142o\u017ce\u0144, zw\u0142aszcza na podstawie tego, co widzisz. Co najwa\u017cniejsze, chc\u0119, aby \u015bwiat wiedzia\u0142, \u017ce LGMD nie jest kar\u0105 ani powodem do lito\u015bci, ani te\u017c powodem do przekonania, \u017ce czyje\u015b \u017cycie jest mniej warto\u015bciowe lub radosne. B\u00f3g mo\u017ce i u\u017cywa trudnych do\u015bwiadcze\u0144, pr\u00f3b i cierpienia<\/p>\n

GDYBY JUTRO MO\u017bNA BY\u0141O \"WYLECZY\u0106\" CHOROB\u0118 ALZHEIMERA, CO BY\u0141OBY PIERWSZ\u0104 RZECZ\u0104, KT\u00d3R\u0104 CHCIA\u0141BY\u015a ZROBI\u0106:<\/strong> Chcia\u0142abym podnie\u015b\u0107 mojego syna i chodzi\u0107 dooko\u0142a, trzymaj\u0105c go blisko. Chcia\u0142abym ta\u0144czy\u0107 z moim m\u0119\u017cem i uczestniczy\u0107 z nim w jakiej\u015b aktywno\u015bci na \u015bwie\u017cym powietrzu\/sportowej\/\u0107wiczeniowej. Chcia\u0142abym biega\u0107, skaka\u0107 i przeskakiwa\u0107... i chwali\u0107 Boga za to wszystko!<\/p>\n

 <\/p>","protected":false},"excerpt":{"rendered":"

01\/18\/2015: NAME: Jessica\u00a0\u00a0\u00a0 AGE: 31 COUNTRY: United States LGMD Sub-Type: […]<\/p>","protected":false},"author":1,"featured_media":149,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,16],"class_list":["post-414","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","tag-united-states"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Jessica<\/title>\n<meta name=\"description\" content=\"Jessica, 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\/01\/18\/jessica\/\" \/>\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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