\n
W JAKIM WIEKU ZOSTA\u0141E\u015a ZDIAGNOZOWANY?
\nZacz\u0105\u0142em mie\u0107 objawy w wieku 16 lat, ale zdiagnozowano mnie dopiero w wieku oko\u0142o 22 lat.<\/p>\n
JAKIE BY\u0141Y PIERWSZE OBJAWY:
\nMoim pierwszym objawem by\u0142y napi\u0119te \u015bci\u0119gna. M\u00f3j lekarz wys\u0142a\u0142 mnie na fizykoterapi\u0119, ale to niewiele pomog\u0142o. Nast\u0119pnie stwierdzili\u015bmy, \u017ce najlepszym rozwi\u0105zaniem b\u0119dzie wyd\u0142u\u017cenie \u015bci\u0119gien Achillesa. Przeszed\u0142em operacj\u0119 i by\u0142em w gipsie przez dwa miesi\u0105ce na ka\u017cdej nodze, po kolei. Podczas rekonwalescencji i ponownego rozpocz\u0119cia fizjoterapii m\u00f3j fizjoterapeuta zauwa\u017cy\u0142, \u017ce nie odzyskuj\u0119 si\u0142y. Wys\u0142a\u0142 mnie do neurologa na dalsze badania.<\/p>\n
CZY MA PAN\/PANI INNYCH CZ\u0141ONK\u00d3W RODZINY, KT\u00d3RZY CHORUJ\u0104 NA LGMD: nie<\/p>\n
CO JEST DLA CIEBIE NAJWI\u0118KSZYM WYZWANIEM W \u017bYCIU Z LGMD?
\nUwa\u017cam, \u017ce najwi\u0119kszym wyzwaniem w \u017cyciu z LGMD jest to, \u017ce ludziom trudno jest j\u0105 zrozumie\u0107. Nie jest \u0142atwo opisa\u0107 komu\u015b LGMD. Wiele os\u00f3b uwa\u017ca, \u017ce przesadzam lub nawet k\u0142ami\u0119, \u017ce cierpi\u0119 na t\u0119 chorob\u0119. Wci\u0105\u017c jestem mobilny, wi\u0119c nie uwa\u017caj\u0105, \u017ce mam jakiekolwiek wyzwania. Chcia\u0142abym, aby ludzie byli bardziej otwarci na wiedz\u0119 o tych chorobach i zrozumieli, jak trudne jest ich leczenie.<\/p>\n
JAKIE JEST TWOJE NAJWI\u0118KSZE OSI\u0104GNI\u0118CIE?
\nMoim najwi\u0119kszym osi\u0105gni\u0119ciem by\u0142o uko\u0144czenie college'u. \u017bonglowa\u0142em prac\u0105 w szkole z testami medycznymi, kt\u00f3re musia\u0142em wykona\u0107. Czasami trudno by\u0142o nad\u0105\u017cy\u0107, ale uda\u0142o mi si\u0119 przetrwa\u0107 i zaanga\u017cowa\u0107 si\u0119 w organizacje szkolne. Do\u0142\u0105czy\u0142am do Gamma Sigma Sigma (stowarzyszenia us\u0142ugowego) i by\u0142am przewodnicz\u0105c\u0105 rady ds. wydarze\u0144 w Zjednoczonym Samorz\u0105dzie Studenckim. Mia\u0142am okazj\u0119 planowa\u0107 wydarzenia, takie jak presti\u017cowy m\u00f3wca i koncert. Opasanie ko\u0144czyn nie powstrzyma\u0142o mnie przed d\u0105\u017ceniem do tego, czego naprawd\u0119 pragn\u0119\u0142am. Przej\u015bcie przez scen\u0119 z dyplomem w r\u0119ku by\u0142o uczuciem, kt\u00f3rego nigdy nie zapomn\u0119.<\/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:
\nChoroba LGMD nauczy\u0142a mnie wi\u0119kszego zrozumienia dla innych i ich historii. Ka\u017cdy ma swoj\u0105 histori\u0119, kt\u00f3rej nie znamy. Nauczy\u0142o mnie r\u00f3wnie\u017c wiele o mnie samym. Dowiedzia\u0142em si\u0119, co mog\u0119 osi\u0105gn\u0105\u0107 pomimo drobnych niepowodze\u0144. Poczucie humoru jest zdecydowanie niezb\u0119dne w trudnych chwilach. Nauczy\u0142em si\u0119 by\u0107 cierpliwy i akceptowa\u0107 fakt, \u017ce ka\u017cdy potrzebuje pomocnej d\u0142oni!<\/p>\n
CO \u015aWIAT POWINIEN WIEDZIE\u0106 O LGMD?
\nChc\u0119, aby ludzie wiedzieli, \u017ce to, \u017ce jej nie wida\u0107, nie oznacza, \u017ce jej nie ma! Staraj si\u0119 by\u0107 cierpliwy i wyrozumia\u0142y dla ludzi, kt\u00f3rzy wyja\u015bniaj\u0105 ci t\u0119 chorob\u0119. Nam jest tak samo trudno to wyt\u0142umaczy\u0107, jak tobie.<\/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:
\nPierwsz\u0105 rzecz\u0105, kt\u00f3r\u0105 chcia\u0142bym zrobi\u0107, to podr\u00f3\u017cowa\u0107 bez wszystkich zwi\u0105zanych z tym trudno\u015bci. Chcia\u0142bym p\u00f3j\u015b\u0107 na pla\u017c\u0119 i pop\u0142ywa\u0107 bez potrzeby pomocy. By\u0142oby mi\u0142o m\u00f3c pojecha\u0107 tam, gdzie chc\u0119, bez konieczno\u015bci planowania ka\u017cdego szczeg\u00f3\u0142u z wyprzedzeniem; po prostu nie martwi\u0107 si\u0119 i dobrze si\u0119 bawi\u0107!<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"
03\/01\/2015: NAME: Julianna AGE: 24 COUNTRY: United States LGMD Sub-Type: […]<\/p>","protected":false},"author":1,"featured_media":304,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[23,16],"class_list":["post-418","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2b","tag-united-states"],"acf":[],"yoast_head":"\n
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