{"id":2781,"date":"2019-09-12T11:55:24","date_gmt":"2019-09-12T16:55:24","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2781"},"modified":"2019-09-12T11:55:24","modified_gmt":"2019-09-12T16:55:24","slug":"individual-with-lgmd-tasha-2","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/uncategorized\/2019\/09\/12\/individual-with-lgmd-tasha-2\/","title":{"rendered":"Osoba z LGMD: Tasha"},"content":{"rendered":"

LGMD \"WYWIAD W \u015aWIETLE REFLEKTOR\u00d3W\"<\/strong><\/p>\n\n\n\n

\"\"<\/figure>\n\n\n\n

Nazwa<\/strong>: Tasha              Wiek<\/strong>: 46<\/p>\n\n\n\n

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

Podtyp LGMD<\/strong>: LGMD2L\n<\/p>\n\n\n\n

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

Zdiagnozowano mnie w wieku 13 lat, ale problemy mia\u0142em od oko\u0142o 8 roku \u017cycia.\nM\u00f3wili, \u017ce to b\u00f3le wzrostowe, a potem postawiono kilka b\u0142\u0119dnych diagnoz.\n\u017ce to b\u00f3le wzrostowe, a potem postawiono kilka b\u0142\u0119dnych diagnoz. W wieku 13 lat zbadano poziom mojej krwi.\ni by\u0142 poza norm\u0105.<\/p>\n\n\n\n

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

Do\u015bwiadczy\u0142em os\u0142abienia i strasznego b\u00f3lu w obu mi\u0119\u015bniach \u0142ydki\npo \u0107wiczeniach.<\/p>\n\n\n\n

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

Tak, m\u00f3j m\u0142odszy brat ma t\u0119 sam\u0105 diagnoz\u0119 LGMD2L. Mia\u0142 zupe\u0142nie inn\u0105 progresj\u0119\ni poziom zaniku mi\u0119\u015bni. Moja starsza siostra\nsiostra nie ma tej choroby. Oboje moi\nrodzice byli nosicielami.<\/p>\n\n\n\n

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

Moje najwi\u0119ksze wyzwania zwi\u0105zane z t\u0105 chorob\u0105 to zm\u0119czenie i b\u00f3l.\nb\u00f3l. I brak zrozumienia ze strony ludzi.<\/p>\n\n\n\n

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

Kontynuacja ka\u017cdego dnia, praca i \u0107wiczenia.<\/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

Zale\u017cy! Dzi\u0119ki temu sta\u0142em si\u0119 adwokatem samego siebie i swojego zdrowia. Powiedziano mi, \u017ce b\u0119d\u0119 na w\u00f3zku inwalidzkim w wieku doros\u0142ym, je\u015bli nie wcze\u015bniej. Powiedziano mi r\u00f3wnie\u017c, \u017cebym odpowiednio zaplanowa\u0142 swoj\u0105 karier\u0119. Nast\u0119pnie kazano mi zrezygnowa\u0107 ze wszystkich sport\u00f3w i aktywno\u015bci. Jako 13-latek mia\u0142o to g\u0142\u0119boki wp\u0142yw na moje dzieci\u0144stwo, poniewa\u017c by\u0142em mocno zaanga\u017cowany w sport i by\u0142em w nim naprawd\u0119 dobry - zw\u0142aszcza w pi\u0142ce no\u017cnej. Aby nie doprowadzi\u0107 si\u0119 do szale\u0144stwa, zignorowa\u0142em rad\u0119 lekarza i zrobi\u0142em to mimo wszystko. Gra\u0142em w pi\u0142k\u0119 no\u017cn\u0105 w college'u i p\u00f3\u017aniej. Wierz\u0119, \u017ce pomog\u0142o mi to w og\u00f3lnym nastawieniu i dobrym samopoczuciu fizycznym. Cz\u0119sto bola\u0142o mnie i mia\u0142em trudno\u015bci z chodzeniem, ale my\u015bl\u0119, \u017ce og\u00f3lnie pomog\u0142o mi to zachowa\u0107 zdrowie i utrzyma\u0107 aktywno\u015b\u0107 mi\u0119\u015bni. Nadal \u0107wicz\u0119 i uprawiam sport na \u015bwie\u017cym powietrzu, ale mam d\u0142u\u017cszy czas na regeneracj\u0119. Jestem ksi\u0119gow\u0105 i uwa\u017cam, \u017ce cz\u0119\u015bciowo zawdzi\u0119czam to swoim umiej\u0119tno\u015bciom. Uwa\u017cam, \u017ce LGMD uczyni\u0142o mnie og\u00f3lnie silniejsz\u0105 osob\u0105. <\/p>\n\n\n\n

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

Po pierwsze, chocia\u017c \u015bwiadomo\u015b\u0107 zosta\u0142a podniesiona na pierwszy plan, g\u0142\u00f3wnie na temat Duchenne MD, to przede wszystkim z powodu corocznych Telethon\u00f3w Jerry'ego Lewisa. Istnieje wiele innych form dystrofii mi\u0119\u015bniowej, na kt\u00f3re cierpi\u0105 ludzie tacy jak ja.... i kt\u00f3re r\u00f3wnie\u017c wymagaj\u0105 bada\u0144. Ludzie cierpi\u0105 i nie ma na to lekarstwa! Zauwa\u017cy\u0142em r\u00f3wnie\u017c, \u017ce w przypadku LGMD nie zawsze wida\u0107, \u017ce ludzie s\u0105 niepe\u0142nosprawni. Znaczenie....I wygl\u0105daj\u0105 zupe\u0142nie normalnie, ale maj\u0105 kilka problem\u00f3w, kt\u00f3rych ludzie nie rozpoznaj\u0105. Poniewa\u017c nie poruszam si\u0119 na w\u00f3zku inwalidzkim, niekt\u00f3rzy my\u015bl\u0105, \u017ce tylko udaj\u0119. Nie mog\u0119 ju\u017c w og\u00f3le chodzi\u0107 po schodach i musia\u0142em odrzuci\u0107 wiele ofert pracy z powodu braku windy.<\/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

Powiedzia\u0142bym \u015bwiatu.....<\/p>\n\n\n\n

* * * Aby przeczyta\u0107 wi\u0119cej wywiad\u00f3w \"LGMD Spotlight Interviews\" lub\naby zg\u0142osi\u0107 si\u0119 na ochotnika do udzia\u0142u w nadchodz\u0105cym wywiadzie, odwied\u017a nasz\u0105 stron\u0119 internetow\u0105\npod adresem: https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a>  <\/p>\n\n\n\n

* * * Prosimy o LIKE, COMMENT i SHARE tego postu, aby pom\u00f3c zwi\u0119kszy\u0107 \u015bwiadomo\u015b\u0107\no LGMD!
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\n<\/p>","protected":false},"excerpt":{"rendered":"

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