{"id":5582,"date":"2021-12-12T18:05:10","date_gmt":"2021-12-12T18:05:10","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5582"},"modified":"2024-02-09T14:23:57","modified_gmt":"2024-02-09T14:23:57","slug":"individual-with-lgmd-soralla","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2021\/12\/12\/individual-with-lgmd-soralla\/","title":{"rendered":"OSOBA Z LGMD: Soralla"},"content":{"rendered":"

\"Lgmd2a<\/p>\n

LGMD \"Wywiad w centrum uwagi\" <\/strong><\/p>\n

N<\/strong>ame<\/strong>: Soralla<\/p>\n

Wiek<\/strong>: 28<\/p>\n

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

Podtyp LGMD<\/strong>: LGMD 2A\/R1 zwi\u0105zane z kalpain\u0105 3<\/p>\n

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

Zdiagnozowano mnie w wieku 23 lat.<\/p>\n

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

Moje pocz\u0105tkowe objawy to lekkie os\u0142abienie dolnej cz\u0119\u015bci cia\u0142a, trudno\u015bci z wchodzeniem po schodach tak szybko, jak by\u0142em do tego przyzwyczajony, lub wstawanie z pod\u0142ogi, zw\u0142aszcza gdy siedzieli\u015bmy na quadzie na zaj\u0119ciach wychowania fizycznego. Nale\u017cy pami\u0119ta\u0107, \u017ce objawy te zacz\u0119\u0142y si\u0119 w 11th<\/sup> klasie szko\u0142y \u015bredniej. Zdiagnozowano mnie jednak dopiero w wieku 23 lat.<\/p>\n

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

U \u017cadnego innego cz\u0142onka rodziny nie zdiagnozowano LGMD. Mam dwoje m\u0142odszego rodze\u0144stwa, kt\u00f3re nie zosta\u0142o przebadane, ale maj\u0105 ju\u017c po 23 lata i oboje maj\u0105 si\u0119 dobrze.<\/p>\n

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

Dla mnie osobi\u015bcie najwi\u0119kszym wyzwaniem jest zaakceptowanie osoby, kt\u00f3r\u0105 si\u0119 staj\u0119. M\u00f3wi\u0119 tak, poniewa\u017c czasami zdaj\u0119 sobie spraw\u0119, \u017ce wiele zmian, przez kt\u00f3re przechodz\u0119, nie jest moim wyborem i jest poza moj\u0105 kontrol\u0105. Jedn\u0105 z nich jest powolna utrata mojej niezale\u017cno\u015bci. Po prowadzeniu bardzo niezale\u017cnego \u017cycia i poczuciu, \u017ce \u015bwiat jest do wzi\u0119cia, poczucie utraty tej wizji przysz\u0142o\u015bci by\u0142o i najprawdopodobniej b\u0119dzie moim najwi\u0119kszym wyzwaniem.<\/p>\n

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

Moim najwi\u0119kszym osi\u0105gni\u0119ciem jest znalezienie swojego g\u0142osu. Nie jestem tak wielk\u0105 or\u0119downiczk\u0105, jak bym chcia\u0142a, ale kilka razy m\u00f3wi\u0142am o sobie i swojej historii. Stworzy\u0142em kana\u0142 na YouTube i opowiedzia\u0142em swoj\u0105 histori\u0119 z w\u0142asnej perspektywy, a tak\u017ce jestem z siebie bardzo dumny, \u017ce wr\u00f3ci\u0142em do szko\u0142y, aby uko\u0144czy\u0107 edukacj\u0119, kt\u00f3ra zosta\u0142a wstrzymana z powodu diagnozy tej niepe\u0142nosprawno\u015bci.<\/p>\n

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

To otworzy\u0142o moje serce, umys\u0142 i dusz\u0119 w spos\u00f3b, w jaki nic innego nigdy nie mog\u0142o. Chc\u0119 wierzy\u0107, \u017ce zawsze by\u0142em bardzo empatyczny i mia\u0142em wielkie serce, ale niestety bardzo s\u0142abe. W dzieci\u0144stwie by\u0142am bardzo prze\u015bladowana i przesz\u0142am przez traum\u0119. Teraz, gdy przez to przechodz\u0119, czuj\u0119, \u017ce to wszystko z przesz\u0142o\u015bci przygotowa\u0142o moje serce do tej bitwy. M\u00f3wi\u0119 to g\u0142o\u015bno i z dum\u0105, poniewa\u017c jestem teraz silniejszy emocjonalnie ni\u017c kiedykolwiek sobie wyobra\u017ca\u0142em. Gdybym mia\u0142 dzi\u015b powiedzie\u0107 o sobie mojemu m\u0142odszemu ja, nie uwierzy\u0142bym sobie.<\/p>\n

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

Chc\u0119, aby \u015bwiat wiedzia\u0142, \u017ce mamy znaczenie. LGMD jest niepe\u0142nosprawno\u015bci\u0105 fizyczn\u0105, ale odbija si\u0119 na zdrowiu emocjonalnym, psychicznym, a nawet duchowym. Dlatego prosz\u0119, pom\u00f3\u017c innym opowiedzie\u0107 ich prawdy, ich historie i pom\u00f3\u017c nam szerzy\u0107 \u015bwiatu nasze przes\u0142anie nadziei, \u017ce pewnego dnia uda nam si\u0119 znale\u017a\u0107 lekarstwo.<\/p>\n

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

Gdybym m\u00f3g\u0142 zosta\u0107 wyleczony jutro, jest tak wiele rzeczy, przyg\u00f3d, wycieczek i wydarze\u0144, w kt\u00f3rych bym uczestniczy\u0142. Ale jedn\u0105 rzecz\u0105, kt\u00f3r\u0105 na pewno bym kontynuowa\u0142, jest rzecznictwo i ci\u0119\u017cka praca, aby upewni\u0107 si\u0119, \u017ce wszyscy, kt\u00f3rzy r\u00f3wnie\u017c mog\u0105 zosta\u0107 wyleczeni, otrzymaj\u0105 szans\u0119, na kt\u00f3r\u0105 zas\u0142uguj\u0105. Poniewa\u017c po \u017cyciu z tym nie mog\u0119 wsta\u0107 i \u017cy\u0107 swoim \u017cyciem i nigdy nie patrze\u0107 wstecz, jakby nigdy nic si\u0119 nie sta\u0142o.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5581,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[70],"class_list":["post-5582","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2a-calpainopathy-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Soralla - 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\" 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