{"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\/tr\/individuals-with-lgmd-interviews\/2018\/11\/06\/individual-with-lgmd-heidi\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Heidi"},"content":{"rendered":"

LGMD \"Spotlight R\u00f6portaj\u0131\" <\/strong><\/p>\n

\u0130sim<\/strong>: Heidi\u00a0 Ya\u015f<\/strong>: 50 ya\u015f\u0131nda\u00a0\"\"<\/a><\/p>\n

\u00dclke<\/strong>: Birle\u015fik Devletler<\/p>\n

LGMD Alt Tipi<\/strong>: LGMD2E<\/p>\n

Ka\u00e7 ya\u015f\u0131nda te\u015fhis konuldu?<\/strong>:<\/p>\n

Bana 33 ya\u015f\u0131mda te\u015fhis konuldu.<\/p>\n

\u0130lk belirtileriniz neydi?<\/strong>:<\/p>\n

S\u0131k s\u0131k sertle\u015fiyor ve a\u011fr\u0131yordum, \u00f6zellikle de bacaklar\u0131m ve ard\u0131ndan halsizlik.<\/p>\n

LGMD hastas\u0131 olan ba\u015fka aile \u00fcyeleriniz var m\u0131?<\/strong><\/p>\n

Ailemde ba\u015fka kimseye LGMD te\u015fhisi konmad\u0131.<\/p>\n

LGMD ile ya\u015faman\u0131n en b\u00fcy\u00fck zorluklar\u0131n\u0131n ne oldu\u011funu d\u00fc\u015f\u00fcn\u00fcyorsunuz?<\/strong>:<\/p>\n

Ba\u015fl\u0131ca zorluklar\u0131mdan biri g\u00fcnl\u00fck a\u011fr\u0131 ve g\u00fc\u00e7s\u00fczl\u00fck. Bana te\u015fhis konuldu\u011funda, bir noktada tekerlekli sandalyeye ihtiya\u00e7 duyacak kadar g\u00fc\u00e7s\u00fcz olaca\u011f\u0131m s\u00f6ylendi. Ya\u015fayaca\u011f\u0131m ac\u0131 hakk\u0131nda hi\u00e7bir fikrim yoktu. Kaslar\u0131mdaki ciddi atrofi, di\u011fer kaslar\u0131ma \u00e7ok fazla bask\u0131 uygulayarak y\u0131rt\u0131lmalar\u0131na neden oluyor.<\/p>\n

En b\u00fcy\u00fck ba\u015far\u0131n\u0131z nedir?<\/strong>:<\/p>\n

En b\u00fcy\u00fck ba\u015far\u0131m hala bir baston yard\u0131m\u0131yla y\u00fcr\u00fcyebiliyor olmam.<\/p>\n

D\u00fcnyan\u0131n LGMD hakk\u0131nda ne bilmesini istersiniz?<\/strong>:<\/p>\n

Ekstremite Ku\u015fa\u011f\u0131 Kas Distrofisi ya\u015fam boyu s\u00fcren ve giderek k\u00f6t\u00fcle\u015fen bir durumdur. Ba\u015fkalar\u0131n\u0131n kronik a\u011fr\u0131 \u00e7ekenlere kar\u015f\u0131 daha \u015fefkatli olmas\u0131n\u0131 istiyorum. Bu hastal\u0131\u011f\u0131n tedavisi yok.<\/p>\n

LGMD hastal\u0131\u011f\u0131n\u0131z yar\u0131n \"tedavi edilebilseydi\", yapmak isteyece\u011finiz ilk \u015fey ne olurdu?<\/strong>:<\/p>\n

E\u011fer LGMD hastal\u0131\u011f\u0131m yar\u0131n tedavi edilebilseydi, Radyoloji Teknolo\u011fu olarak \u00e7al\u0131\u015fmaya ba\u015flard\u0131m. Ayr\u0131ca \u00e7ocuklar\u0131m ve kocamla ko\u015fmaya ve bisiklete binmeye giderdim.<\/p>\n

 <\/p>\n

*** LGMD konusunda fark\u0131ndal\u0131k yaratmaya yard\u0131mc\u0131 olmak i\u00e7in l\u00fctfen bu g\u00f6nderiyi BE\u011eEN\u0130N, YORUM YAPIN ve PAYLA\u015eIN!<\/p>\n

*** Daha fazla \"LGMD Spotlight R\u00f6portaj\u0131\" okumak veya gelecek bir r\u00f6portajda yer almak i\u00e7in g\u00f6n\u00fcll\u00fc olmak i\u00e7in l\u00fctfen web sitemizi ziyaret edin https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>\n

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

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