{"id":5635,"date":"2022-02-08T04:21:00","date_gmt":"2022-02-08T04:21:00","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5635"},"modified":"2024-02-09T14:23:56","modified_gmt":"2024-02-09T14:23:56","slug":"individual-with-lgmd-john","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2022\/02\/08\/individual-with-lgmd-john\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: John"},"content":{"rendered":"

\"<\/p>\n

\u0130sim<\/strong>: John\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Ya\u015f<\/strong>: 28 yrs. old<\/p>\n

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

LGMD Alt Tipi<\/strong>: LGMD 2J\/R10 titin ile ili\u015fkili<\/p>\n

 <\/p>\n

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

10 ya\u015f\u0131ndayken bana Becker MD te\u015fhisi kondu. Daha sonra 11-12 ya\u015flar\u0131nda Mitokondriyal miyopati te\u015fhisi kondu. Daha sonra 2016'da LGMD te\u015fhisi kondu ve LGMD2J\/R10 nihayet 2021'de genetik olarak do\u011fruland\u0131.<\/p>\n

\u0130lk BEL\u0130RT\u0130LER\u0130N\u0130Z nelerdi?<\/strong><\/p>\n

Be\u015f ya\u015f civar\u0131nda d\u00fczg\u00fcn y\u00fcr\u00fcmekte zorluk \u00e7ekiyordum. Egzersiz yaparken muazzam bald\u0131r a\u011fr\u0131s\u0131 \u00e7ekiyordum ve di\u011fer \u00e7ocuklara ayak uydurmakta zorlan\u0131yordum.<\/p>\n

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

Karde\u015fimde de LGMD2J var.<\/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 zorluklar, sevdi\u011fim \u015feyleri yapma yetene\u011fimi kaybetmek ve ilerleyen g\u00fc\u00e7s\u00fczl\u00fck nedeniyle tekrar tekrar yeni hobiler bulmak zorunda kalmak. Bununla ba\u015fa \u00e7\u0131kmak \u00e7ok zor. Art\u0131k g\u00fcnl\u00fck aktivitelerimi muhte\u015fem e\u015fim Christina'n\u0131n yard\u0131m\u0131 olmadan ba\u011f\u0131ms\u0131z olarak tamamlaman\u0131n zor ya da imkans\u0131z oldu\u011funu g\u00f6r\u00fcyorum. Ne yaz\u0131k ki, engelimin do\u011fas\u0131 ve kulland\u0131\u011f\u0131m mobilite cihaz\u0131 nedeniyle s\u0131k s\u0131k ayr\u0131mc\u0131l\u0131\u011fa u\u011fruyorum ve baz\u0131 kamusal alanlara eri\u015fimim engelleniyor.<\/p>\n

En b\u00fcy\u00fck BA\u015eARINIZ nedir?<\/strong><\/p>\n

G\u00fczel e\u015fim Christina ile evlenmek ve Kimya b\u00f6l\u00fcm\u00fcnden lisans derecesiyle mezun olmak.<\/p>\n

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

Hastal\u0131\u011fa sahip olmak, beni zorlayarak, engelli toplumundaki di\u011fer ki\u015filerle tan\u0131\u015fmam\u0131 sa\u011flayarak ve bug\u00fcn oldu\u011fum gibi bir savunucu olmaya iterek bug\u00fcn kim oldu\u011fumu ger\u00e7ekten \u015fekillendirdi. Fiziksel yeteneklerimin s\u0131n\u0131rl\u0131 olmas\u0131 beni daha yarat\u0131c\u0131 bir sorun \u00e7\u00f6z\u00fcc\u00fc yapt\u0131 ve bana sab\u0131r hakk\u0131nda \u00e7ok \u015fey \u00f6\u011fretti. Hastal\u0131k bazen beni ger\u00e7ekten yeniyormu\u015f gibi hissettiriyor, ancak benimki gibi hastal\u0131klar i\u00e7in ger\u00e7ek tedavi m\u00fccadelesinde yaln\u0131z olmad\u0131\u011f\u0131m\u0131 hat\u0131rlamak benim i\u00e7in \u00f6nemli.<\/p>\n

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

LGMD gibi bir hastal\u0131\u011fa sahip olman\u0131n ki\u015finin ya\u015fam\u0131, ruh sa\u011fl\u0131\u011f\u0131 ve ya\u015fam beklentileri \u00fczerinde yaratabilece\u011fi etki konusunda daha yayg\u0131n bir fark\u0131ndal\u0131k olmas\u0131n\u0131 diliyorum. Ba\u015fkalar\u0131n\u0131n hastal\u0131\u011f\u0131n ilerleyi\u015finin ciddiyetinin yan\u0131 s\u0131ra kronik ve nadir hastal\u0131klara kar\u015f\u0131 hepimizin bir noktada kat\u0131lmas\u0131 gereken de\u011ferli m\u00fccadelenin de fark\u0131na varmas\u0131n\u0131 istiyorum.<\/p>\n

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

Eller a\u015fa\u011f\u0131, bir arazi bisikletine atlar ve g\u00fcnlerce s\u00fcrerdim! Gen\u00e7ken \u00e7ok binerdim ama art\u0131k yeterince g\u00fc\u00e7l\u00fc de\u011filim. H\u00e2l\u00e2 her g\u00fcn bunu d\u00fc\u015f\u00fcn\u00fcyorum.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5636,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,66],"tags":[78],"class_list":["post-5635","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2j","tag-lgmd2j-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: John - 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=\"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2022\/02\/08\/individual-with-lgmd-john\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: John - 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