{"id":1446,"date":"2017-04-08T12:30:56","date_gmt":"2017-04-08T17:30:56","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1446"},"modified":"2017-04-08T12:30:56","modified_gmt":"2017-04-08T17:30:56","slug":"darlene","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2017\/04\/08\/darlene\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Darlene"},"content":{"rendered":"<p><strong>LGMD \"SPOT I\u015eI\u011eI R\u00d6PORTAJI\"<\/strong><\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p><strong>\u0130sim<\/strong>:  Darlene\u00a0\u00a0\u00a0 <strong>Ya\u015f<\/strong>: 65 yrs. old<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2017\/04\/Non-Dysferlin-Miyoshi-Myopathy.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1445 alignright\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27300%27%20height%3D%27169%27%20viewBox%3D%270%200%20300%20169%27%3E%3Crect%20width%3D%27300%27%20height%3D%27169%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2017\/04\/Non-Dysferlin-Miyoshi-Myopathy-300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>\u00dclke<\/strong>:   Birle\u015fik Devletler<\/p>\n<p><strong>LGMD Alt Tipi<\/strong>:    Disferlin D\u0131\u015f\u0131 Miyoshi Miyopatisi<\/p>\n<p>&nbsp;<\/p>\n<p><strong>Ka\u00e7 ya\u015f\u0131nda te\u015fhis konuldu?<\/strong>:<\/p>\n<p>Bana 64 ya\u015f\u0131nda te\u015fhis konuldu.<\/p>\n<p><strong>\u0130lk belirtileriniz neydi?<\/strong>:<\/p>\n<p>Geriye d\u00f6n\u00fcp bakt\u0131\u011f\u0131mda, semptomlar\u0131n 40'l\u0131 ya\u015flar\u0131mda veya daha da \u00f6ncesinde ba\u015flad\u0131\u011f\u0131n\u0131 fark ediyorum.  Her zaman aktiftim, ancak y\u0131llar ge\u00e7tik\u00e7e ko\u015fu, kayak ve paten gibi beceriler giderek zorla\u015ft\u0131, bu y\u00fczden bisiklet, kettlebell, a\u011f\u0131rl\u0131k ve CrossFit antrenman\u0131 gibi ba\u015fka aktiviteler yapt\u0131m.  Raynaud semptomlar\u0131mla daha s\u0131cak giyinerek ba\u015fa \u00e7\u0131kt\u0131m.  60'l\u0131 ya\u015flar\u0131m\u0131n ba\u015f\u0131nda bald\u0131rlar\u0131mdaki g\u00f6zle g\u00f6r\u00fcl\u00fcr kas erimesi, tan\u0131ya giden y\u0131llarca s\u00fcrecek yolculu\u011fumu ba\u015flatt\u0131.  O zamana kadar her iki gastroknemius kas\u0131n\u0131n 80-90%'si ya\u011f ile yer de\u011fi\u015ftirmi\u015fti.<\/p>\n<p><strong>LGMD hastas\u0131 olan ba\u015fka aile \u00fcyeleriniz var m\u0131?<\/strong><\/p>\n<p>Hay\u0131r, ama iki k\u0131z karde\u015fte juvenil diyabet vard\u0131.  Biri 53 ya\u015f\u0131nda hastal\u0131\u011fa ba\u011fl\u0131 kalp komplikasyonlar\u0131ndan \u00f6ld\u00fc.  \u015eimdi 58 ya\u015f\u0131nda olan ve sa\u011fl\u0131k durumu hassas olan di\u011ferine ise 39 ya\u015f\u0131nda b\u00f6brek\/pankreas nakli yap\u0131lm\u0131\u015f.<\/p>\n<p><strong>LGMD ile ya\u015faman\u0131n en b\u00fcy\u00fck zorluklar\u0131n\u0131n ne oldu\u011funu d\u00fc\u015f\u00fcn\u00fcyorsunuz?<\/strong>:<\/p>\n<p>Bir CrossFit spor salonunun ortak sahibi olarak, s\u00fcrekli olarak sa\u011fl\u0131kl\u0131 kaslar\u0131m\u0131 g\u00fc\u00e7l\u00fc ve hareketli tutacak kadar s\u0131k\u0131 \u00e7al\u0131\u015fmakla, risk alt\u0131ndaki kaslar\u0131m\u0131 yok edecek kadar s\u0131k\u0131 \u00e7al\u0131\u015fmamak aras\u0131ndaki uygun dengeyi bulmaya \u00e7al\u0131\u015f\u0131yorum.  \u015eu ana kadar hastal\u0131\u011f\u0131n hayat\u0131m \u00fczerindeki etkisi minimum d\u00fczeyde oldu: Ortalama 65 ya\u015f\u0131ndan daha gen\u00e7 g\u00f6r\u00fcnmeye, hissetmeye ve hareket etmeye devam ediyorum.  Her g\u00fcn yapabildiklerime odaklanmaya \u00e7al\u0131\u015f\u0131yorum ve kendime sadece benim de\u011fil herkesin ya\u015flanma ad\u0131 verilen ilerleyici dejeneratif bir durumla kar\u015f\u0131 kar\u015f\u0131ya oldu\u011funu hat\u0131rlat\u0131yorum.<\/p>\n<p><strong>En b\u00fcy\u00fck ba\u015far\u0131n\u0131z nedir?<\/strong>:<\/p>\n<p>Diyabetik k\u0131z karde\u015flerle b\u00fcy\u00fcmek bana iyi beslenme ve d\u00fczenli egzersizin \u00f6nemini a\u015f\u0131lad\u0131.  A\u011fz\u0131ma ne koydu\u011fumun \u00f6nemli oldu\u011funu ve sizi rahats\u0131z eden \u015fey ne olursa olsun yeterli uyku ve stresten ar\u0131nman\u0131n \u015fart oldu\u011funu anl\u0131yorum.  Sa\u011fl\u0131kl\u0131 al\u0131\u015fkanl\u0131klar\u0131n semptomlar\u0131m\u0131 en aza indirmeye yard\u0131mc\u0131 oldu\u011funu kesin olarak bilemesem de oldu\u011funa inanmay\u0131 se\u00e7iyorum ve bu konuda m\u00fcmk\u00fcn oldu\u011funca proaktif olmaya devam edece\u011fim.  Bir antren\u00f6r olarak, m\u00fckemmel sa\u011fl\u0131k uygulamalar\u0131n\u0131 modelleyebiliyor ve \u00fcyelerimizle yak\u0131n bir \u015fekilde \u00e7al\u0131\u015farak bu faydalardan kendilerinin de yararlanmas\u0131n\u0131 sa\u011flayabiliyorum.  CrossFit antren\u00f6rl\u00fc\u011f\u00fcne 60 ya\u015f\u0131nda ba\u015flad\u0131m (35 y\u0131ll\u0131k gazetecilik kariyerimden sonra) ve ba\u015fkalar\u0131n\u0131n size hayatlar\u0131n\u0131 daha iyi hale getirmelerine yard\u0131mc\u0131 oldu\u011funuzu s\u00f6ylemesi \u00e7ok sevindirici.<\/p>\n<p><strong>LGMD bug\u00fcn oldu\u011funuz ki\u015fi olman\u0131zda sizi nas\u0131l etkiledi?<\/strong><\/p>\n<p>Resmi te\u015fhisimden onlarca y\u0131l \u00f6nce, \u015fa\u015f\u0131rt\u0131c\u0131 fiziksel s\u0131n\u0131rlamalar beni aktif olman\u0131n ve rekabet\u00e7i a\u00e7\u0131k hava dayan\u0131kl\u0131l\u0131k sporcular\u0131ndan olu\u015fan bir toplulu\u011fa katk\u0131da bulunman\u0131n ba\u015fka yollar\u0131n\u0131 bulmaya itti.  Diren\u00e7li, fiziksel olarak aktif ve g\u00fc\u00e7l\u00fc olmak kimli\u011fimin bir par\u00e7as\u0131 ve elimden geldi\u011fince bu kimli\u011fe tutunmaya \u00e7al\u0131\u015faca\u011f\u0131m.  Gelecekteki belirsizliklerle y\u00fczle\u015fmeme yard\u0131mc\u0131 olmas\u0131 i\u00e7in bu zihniyete g\u00fcveniyorum.<\/p>\n<p><strong>D\u00fcnyan\u0131n LGMD hakk\u0131nda ne bilmesini istersiniz?<\/strong>:<\/p>\n<p>Musk\u00fcler Distrofi, sonsuz bireysel varyasyonlar\u0131 olan nadir bir hastal\u0131kt\u0131r.  Tedavisi olmad\u0131\u011f\u0131ndan ve ila\u00e7 \u015firketlerinin bir tedavi bulmak i\u00e7in \u00e7ok az mali te\u015fviki bulundu\u011fundan, te\u015fhis genellikle sa\u011fl\u0131k uzmanlar\u0131n\u0131n sizinle ilgilenmesinin sonu olur.  Bulabildi\u011finiz her yerde destek bulun ve kendi savunucunuz olun.<\/p>\n<p><strong>LGMD hastal\u0131\u011f\u0131n\u0131z yar\u0131n \"tedavi edilebilseydi\", yapmak isteyece\u011finiz ilk \u015fey ne olurdu?<\/strong>:<\/p>\n<p>Kros kaya\u011f\u0131 yapmay\u0131 \u00e7ok isterim.  54K Amerikan Birkebeiner Kayak Parkuru'na ba\u011flanan bir patika sisteminde ya\u015f\u0131yoruz ve bu g\u00fczel ormanl\u0131k parkurun tepeleri ve vadileri boyunca zarif\u00e7e s\u00fcz\u00fclmenin heyecan\u0131n\u0131 ya\u015famay\u0131 \u00e7ok isterim.<\/p>\n<p>&nbsp;<\/p>\n<p>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: <a href=\"https:\/\/www.lgmd-info.org\/tr\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSPOTLIGHT INTERVIEW\u201d \u00a0 Name:\u00a0 Darlene\u00a0\u00a0\u00a0 Age: \u00a0\u00a065 yrs. old [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1445,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[73],"class_list":["post-1446","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-non-dysferlin-miyoshi-myopathy-united-states"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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