{"id":1315,"date":"2016-09-02T08:01:44","date_gmt":"2016-09-02T13:01:44","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1315"},"modified":"2016-09-02T08:01:44","modified_gmt":"2016-09-02T13:01:44","slug":"melanie-2","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2016\/09\/02\/melanie-2\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Melanie"},"content":{"rendered":"

LGMD Spotlight r\u00f6portaj\u0131 -\u00a0<\/strong>09\/02\/2016<\/strong><\/p>\n

\u00a0<\/strong><\/p>\n

\u0130sim<\/strong>: Melanie\u00a0 Ya\u015f<\/strong>: 29 yrs. old\"LGMD2i<\/a><\/p>\n

\u00dclke<\/strong>: Almanya<\/p>\n

LGMD Alt Tipi<\/strong> : LGMD2i (heterozigot tip)<\/p>\n

 <\/p>\n

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

Bana 4 ya\u015f\u0131ndayken kas biyopsisi yap\u0131larak te\u015fhis konuldu.<\/p>\n

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

Ko\u015fmaya ve merdiven \u00e7\u0131kmaya \u00e7al\u0131\u015ft\u0131\u011f\u0131mda hep d\u00fc\u015ferdim. Bunun sonucunda bir\u00e7ok \u00e7\u00fcr\u00fck ve yara izi olu\u015ftu! Ayr\u0131ca yerden kendi ba\u015f\u0131ma kalkam\u0131yordum. Bu belirtiler zaten 2 ya\u015f civar\u0131nda ortaya \u00e7\u0131kt\u0131.<\/p>\n

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

Hay\u0131r, ailemde LGMD hastas\u0131 olan tek ki\u015fi benim.<\/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

En b\u00fcy\u00fck zorluk, insanlar\u0131n g\u00fcnl\u00fck i\u015fleri yapamayacak kadar tembel olmad\u0131\u011f\u0131m\u0131, ancak bunlar\u0131 kendi ba\u015f\u0131ma yapamayacak kadar g\u00fc\u00e7s\u00fcz oldu\u011fumu anlamalar\u0131n\u0131 sa\u011flamak. Bir\u00e7o\u011fumuz i\u00e7in bir ba\u015fka zorluk da tekerlekli sandalyeyi en iyi arkada\u015f\u0131n\u0131z olarak kabul etmektir!<\/p>\n

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

\u00c7ok fazla ba\u015far\u0131 var! LGMD ile iyi bir hayat ya\u015famak ba\u015fl\u0131 ba\u015f\u0131na bir ba\u015far\u0131d\u0131r! Blogumda (www.littlemissturtle.com<\/a>) Tekerlekler \u00fczerindeki t\u00fcm ba\u015far\u0131lar\u0131m ve maceralar\u0131m hakk\u0131nda yaz\u0131yorum.<\/p>\n

LGMD bug\u00fcn oldu\u011funuz ki\u015fi olman\u0131zda sizi nas\u0131l etkiledi?<\/strong><\/p>\n

Ben LGMD ile b\u00fcy\u00fcd\u00fcm. Bu beni \u00e7ok g\u00fc\u00e7l\u00fc bir insan yapt\u0131. Kas zay\u0131fl\u0131\u011f\u0131 ve atrofisine neden olan ilerleyici bir hastal\u0131kla ba\u015fa \u00e7\u0131kmak ve bu konuda tamamen bilin\u00e7li olmak, hayat\u0131m\u0131n her g\u00fcn\u00fc takdir etti\u011fim zorlu bir m\u00fccadele! Sevdi\u011fim \u015feyleri yapmaya daha fazla zaman ay\u0131rabilmek i\u00e7in yak\u0131n zamanda \u00e7al\u0131\u015fmay\u0131 b\u0131rakt\u0131m. LGMD bana i\u015fleri kolay yoldan halletmeyi \u00f6\u011fretti. Daha \u00e7ok e\u011flenin, daha az endi\u015felenin, pozitif kal\u0131n ve sevdiklerinizle m\u00fcmk\u00fcn oldu\u011funca \u00e7ok zaman ge\u00e7irin. \u0130\u015fte benim yolum bu!<\/p>\n

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

LGMD nadir ve zor bir hastal\u0131kt\u0131r. Multipl Skleroz (MS) vb. gibi di\u011fer hastal\u0131klarla kar\u015f\u0131la\u015ft\u0131r\u0131lamaz. LGMD'li bir ki\u015fi yard\u0131m istedi\u011finde onu tam olarak dinlemek \u00f6nemlidir - bu s\u00fcre\u00e7te onu incitmekten ka\u00e7\u0131nmak i\u00e7in.<\/p>\n

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

Yataktan tek ba\u015f\u0131ma kalkard\u0131m, giyinirdim ve sonra hayat\u0131m\u0131n y\u00fcr\u00fcy\u00fc\u015f\u00fcne \u00e7\u0131kard\u0131m! Ayaklar\u0131m beni ta\u015f\u0131yabildi\u011fi s\u00fcrece y\u00fcr\u00fcrd\u00fcm.<\/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>","protected":false},"excerpt":{"rendered":"

LGMD Spotlight interview –\u00a009\/02\/2016 \u00a0 Name:\u00a0 Melanie\u00a0 Age:\u00a0 29 yrs. 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