{"id":1112,"date":"2016-01-18T11:30:03","date_gmt":"2016-01-18T17:30:03","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1112"},"modified":"2016-01-18T11:30:03","modified_gmt":"2016-01-18T17:30:03","slug":"laurence","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2016\/01\/18\/laurence\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Laurence"},"content":{"rendered":"

\"LGMD SPOT I\u015eI\u011eI R\u00d6PORTAJI\" <\/strong>– 01\/18\/2016<\/em><\/p>\n

\u0130sim<\/strong>: Laurence \u00a0\u00a0\u00a0Ya\u015f<\/strong>: 49\"LGMD2A<\/a><\/p>\n

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

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

 <\/p>\n

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

Bana 42 ya\u015f\u0131mda te\u015fhis konuldu.<\/p>\n

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

Ya\u015fad\u0131\u011f\u0131m semptomlar aras\u0131nda \u015funlar vard\u0131: b\u00fcy\u00fck yorgunluk, merdiven \u00e7\u0131kmakta zorlanma, engebeli bir zeminde y\u00fcr\u00fcrken d\u00fc\u015fme ve oturur pozisyondan kalkmakta zorlanma.<\/p>\n

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

Hay\u0131r, LGMD2A'l\u0131 tek aile \u00fcyesi benim..<\/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

Evrim olduk\u00e7a yava\u015f ama d\u00fczenli bir hayat\u0131m olmas\u0131 i\u00e7in olduk\u00e7a dikkatli olmal\u0131y\u0131m, aksi takdirde daha da k\u00f6t\u00fcle\u015fiyor ve yorgun oldu\u011fumda evrim daha h\u0131zl\u0131 oluyor ve atrofi daha g\u00fc\u00e7l\u00fc oluyor. Bunu \u00f6zel ya da mesleki faaliyetlerle uzla\u015ft\u0131rmak zor.<\/p>\n

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

Hastal\u0131k hakk\u0131nda \u00e7ok fazla d\u00fc\u015f\u00fcnmemek ve devam etmek i\u00e7in \u00f6nemli olan \u00e7al\u0131\u015fmaya devam etmeye \u00e7al\u0131\u015f\u0131yorum.<\/p>\n

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

Ac\u0131lara ve fiziksel zorluklara kar\u015f\u0131 sava\u015f\u0131rken, hastal\u0131k bana \u00f6nceliklerimi nas\u0131l belirleyece\u011fimi \u00f6\u011fretiyor ama ayn\u0131 zamanda her zaman\u00a0 <\/strong>\u0130yimser olman\u0131z i\u00e7in sizden daha hasta olan insanlar var.<\/p>\n

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

D\u00fcnyan\u0131n LGMD'nin yetim hastal\u0131klar aras\u0131nda yer ald\u0131\u011f\u0131n\u0131 bilmesini istiyorum, bu nedenle etkili bir tedavi bulmak i\u00e7in gerekli fonlar\u0131 toplamak zordur. LGMD hakk\u0131nda \u00e7evremizde ama en \u00e7ok da t\u0131p camias\u0131nda ve hastalar\u0131n\u0131n uygun t\u0131p merkezlerine gitmelerine yard\u0131mc\u0131 olabilecek pratisyen hekimlerle konu\u015fmak \u00f6nemlidir. Bu noktay\u0131 a\u00e7\u0131klamak i\u00e7in \u00e7ok ki\u015fisel bir \u00f6rne\u011fim var - te\u015fhis konmadan \u00f6nce aile hekimim bana semptomlar\u0131m\u0131n sinir krizinden kaynakland\u0131\u011f\u0131n\u0131 s\u00f6yledi!!!<\/p>\n

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

Baston olmadan do\u011fal bir \u015fekilde y\u00fcr\u00fcmek ve t\u00fcm d\u00fcnyay\u0131 gezmek, ailemle birlikte \u00f6zg\u00fcr hissederek yurtd\u0131\u015f\u0131na gidebilmek istiyorum!<\/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<\/p>","protected":false},"excerpt":{"rendered":"

\u201cLGMD SPOTLIGHT INTERVIEW\u201d – 01\/18\/2016 Name:\u00a0 Laurence \u00a0\u00a0\u00a0Age: 49 Country: […]<\/p>","protected":false},"author":1,"featured_media":1114,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,18,15],"class_list":["post-1112","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-france","tag-lgmd2a"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Laurence - LGMD Awareness Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"http:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2016\/01\/18\/laurence\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Laurence - 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