{"id":2334,"date":"2018-11-06T12:50:43","date_gmt":"2018-11-06T18:50:43","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2334"},"modified":"2018-11-06T12:50:43","modified_gmt":"2018-11-06T18:50:43","slug":"individual-with-lgmd-heidi","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2018\/11\/06\/individual-with-lgmd-heidi\/","title":{"rendered":"OSOBA Z LGMD: Heidi"},"content":{"rendered":"

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

Nazwa<\/strong>: Heidi\u00a0 Wiek<\/strong>: 50 lat\u00a0\"\"<\/a><\/p>\n

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

Podtyp LGMD<\/strong>: LGMD2E<\/p>\n

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

Zdiagnozowano mnie w wieku 33 lat.<\/p>\n

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

Cz\u0119sto by\u0142em sztywny i obola\u0142y, zw\u0142aszcza nogi, a potem os\u0142abiony.<\/p>\n

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

U nikogo innego w mojej rodzinie nie zdiagnozowano LGMD.<\/p>\n

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

Jednym z moich g\u0142\u00f3wnych wyzwa\u0144 jest codzienny b\u00f3l i os\u0142abienie. Kiedy postawiono mi diagnoz\u0119, powiedziano mi, \u017ce w pewnym momencie b\u0119d\u0119 tak s\u0142aby, \u017ce b\u0119d\u0119 potrzebowa\u0142 w\u00f3zka inwalidzkiego. Nie mia\u0142em poj\u0119cia o b\u00f3lu, kt\u00f3rego do\u015bwiadcz\u0119. Powa\u017cny zanik mi\u0119\u015bni wywiera zbyt du\u017cy nacisk na inne mi\u0119\u015bnie, powoduj\u0105c ich naderwanie.<\/p>\n

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

Moim najwi\u0119kszym osi\u0105gni\u0119ciem jest to, \u017ce nadal jestem w stanie chodzi\u0107 z pomoc\u0105 laski.<\/p>\n

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

Dystrofia mi\u0119\u015bniowa obr\u0119czy ko\u0144czyny dolnej jest chorob\u0105 trwaj\u0105c\u0105 ca\u0142e \u017cycie, kt\u00f3ra stopniowo si\u0119 pogarsza. Chc\u0119, aby inni byli bardziej wsp\u00f3\u0142czuj\u0105cy dla tych, kt\u00f3rzy cierpi\u0105 z powodu przewlek\u0142ego b\u00f3lu. Nie ma lekarstwa na t\u0119 chorob\u0119.<\/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

Gdyby moja choroba LGMD mog\u0142a zosta\u0107 wyleczona jutro, posz\u0142abym do pracy jako technik radiolog. Biega\u0142abym i je\u017adzi\u0142a na rowerze z moimi dzie\u0107mi i m\u0119\u017cem.<\/p>\n

 <\/p>\n

*** Prosimy o LIKE, COMMENT i SHARE tego postu, aby pom\u00f3c zwi\u0119kszy\u0107 \u015bwiadomo\u015b\u0107 na temat LGMD!<\/p>\n

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

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

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