{"id":615,"date":"2015-04-29T08:06:42","date_gmt":"2015-04-29T13:06:42","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=615"},"modified":"2015-04-29T08:06:42","modified_gmt":"2015-04-29T13:06:42","slug":"alicia","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2015\/04\/29\/alicia\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Alicia"},"content":{"rendered":"

04\/29\/2015<\/p>\n

\u0130sim:<\/strong>\u00a0 Alicia<\/p>\n

Ya\u015f<\/strong>: 38 ya\u015f\u0131nda\"LGMD2A<\/a><\/p>\n

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

LGMD Alt Tipi<\/strong>: LGMD2A \/ Kalpainopati<\/p>\n

 <\/p>\n

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

Y\u0131llarca yanl\u0131\u015f te\u015fhis konulduktan sonra 35 ya\u015f\u0131nda te\u015fhis konuldu.<\/p>\n

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

Ayak parmaklar\u0131m\u0131n \u00fczerinde y\u00fcr\u00fcmek ve ko\u015fmak ve merdiven \u00e7\u0131kmak ilk belirtilerdi.<\/p>\n

LGMD hastas\u0131 olan ba\u015fka aile \u00fcyeleriniz var m\u0131: Hay\u0131r<\/strong><\/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

Benim i\u00e7in en b\u00fcy\u00fck zorluklardan biri, LGMD ve hastal\u0131kla birlikte gelen zorluklar ve semptomlar s\u00f6z konusu oldu\u011funda e\u011fitimli doktorlar bulmak oldu. Bir\u00e7ok doktor sorunlar\u0131m\u0131 ciddiye almad\u0131 (kas a\u011fr\u0131lar\u0131, g\u00fc\u00e7 kayb\u0131, y\u00fcr\u00fcme\/merdiven \u00e7\u0131kma sorunlar\u0131) ya da sonunda beni Mayo Clinic'e g\u00f6nderen bir doktor bulana kadar otoimm\u00fcn bir hastal\u0131\u011f\u0131m oldu\u011funu d\u00fc\u015f\u00fcnd\u00fc. EMG, kan testleri ve kas biyopsisinden sonra nihayet te\u015fhis konuldu ancak \u015fu anda bulundu\u011fum noktaya gelmem uzun y\u0131llar ve bir\u00e7ok doktor gerektirdi.<\/p>\n

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

On d\u00f6rt y\u0131ll\u0131k e\u015fimle birlikte iki harika k\u0131z \u00e7ocu\u011fu yeti\u015ftirmek hem bir ba\u015far\u0131 hem de bir l\u00fctuf oldu. Onlara nezaketi ve insanlara kar\u015f\u0131 daha empatik olmay\u0131 \u00f6\u011fretmek, \u00e7\u00fcnk\u00fc etraf\u0131m\u0131zdakilerin m\u00fccadelelerini asla ger\u00e7ekten bilemeyiz.<\/p>\n

LGMD bug\u00fcn oldu\u011funuz ki\u015fi olman\u0131zda sizi nas\u0131l etkiledi? \u00a0<\/strong><\/p>\n

Daha nazik olmay\u0131, daha \u00e7ok dinlemeyi ve her g\u00fcn g\u00fclmeyi \u00f6\u011fretti. Bazen yapabilece\u011finiz tek \u015fey g\u00fclmektir.<\/p>\n

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

\u015eu anda LGMD i\u00e7in herhangi bir tedavi veya iyile\u015ftirme bulunmad\u0131\u011f\u0131n\u0131 ve te\u015fhis konmu\u015f bir aile \u00fcyeniz veya hatta bir arkada\u015f\u0131n\u0131z varsa l\u00fctfen kendinizi hastal\u0131k hakk\u0131nda e\u011fitin. Bu birileri i\u00e7in d\u00fcnyalara bedel olabilir.<\/p>\n

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

B\u00fct\u00fcn gece dans edin!<\/p>","protected":false},"excerpt":{"rendered":"

04\/29\/2015 Name:\u00a0 Alicia Age:\u00a0 38 yrs. old Country: United States […]<\/p>","protected":false},"author":1,"featured_media":616,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,16],"class_list":["post-615","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","tag-united-states"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Alicia<\/title>\n<meta name=\"description\" content=\"Alicia, who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares her experience in living with this progressive neuro-muscular disease.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2015\/04\/29\/alicia\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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