{"id":5519,"date":"2021-09-20T00:30:58","date_gmt":"2021-09-20T00:30:58","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5519"},"modified":"2024-02-09T14:24:00","modified_gmt":"2024-02-09T14:24:00","slug":"individual-with-lgmd-sanjana","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2021\/09\/20\/individual-with-lgmd-sanjana\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Sanjana"},"content":{"rendered":"

\"<\/p>\n

LGMD \"SPOT I\u015eI\u011eI R\u00d6PORTAJI\"<\/p>\n

\u0130sim<\/strong>: Sanjana<\/p>\n

Ya\u015f<\/strong>: 55 ya\u015f\u0131nda<\/p>\n

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

LGMD Alt Tipi<\/strong>: LGMD2A\/R1 Calpain 3 - ili\u015fkili<\/p>\n

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

Bana 13 ya\u015f\u0131mda te\u015fhis konuldu.<\/p>\n

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

Belirtiler be\u015f ya\u015f civar\u0131nda ortaya \u00e7\u0131kmaya ba\u015flad\u0131. Merdiven \u00e7\u0131karken veya yoku\u015f yukar\u0131 y\u00fcr\u00fcrken ayak parma\u011f\u0131mla y\u00fcr\u00fcyordum. Oturdu\u011fum yerden kalkarken diz deste\u011fine ihtiya\u00e7 duyuyordum. \u00c7\u00f6melme pozisyonunda otururken ayak parmaklar\u0131m\u0131n \u00fczerinde dengede dururdum.<\/p>\n

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

Evet, iki a\u011fabeyime de LGMD2A\/R1 te\u015fhisi kondu.<\/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 g\u00fcnl\u00fck ya\u015fam aktivitelerini i\u00e7eriyor. Ve her ge\u00e7en g\u00fcn ya\u015flanan ebeveynlerime hizmet edememek.<\/p>\n

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

En b\u00fcy\u00fck ba\u015far\u0131m kas distrofisi i\u00e7in bir organizasyon kurmak oldu - Hindistan Kas Distrofisi Derne\u011fi. www.iamd.in<\/a> \u015eimdi de t\u00fcm kas distrofisi t\u00fcrleri i\u00e7in bir rehabilitasyon merkezi kuruyor.<\/p>\n

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

Bug\u00fcn geldi\u011fim nokta LGMD sayesinde oldu. Bir yandan 27 y\u0131l boyunca ba\u015far\u0131l\u0131 bir bayan tasar\u0131mc\u0131 giyim buti\u011fi i\u015flettim, di\u011fer yandan da kas distrofisi i\u00e7in bir organizasyon kurdum.<\/p>\n

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

D\u00fcnyan\u0131n LGMD hakk\u0131nda her \u015feyi bilmesini istiyorum - semptomlar, zorluklar, y\u00f6netim, rehabilitasyon, en son bilimsel ara\u015ft\u0131rmalar ve bu ilerleyici n\u00f6rom\u00fcsk\u00fcler hastal\u0131ktan etkilenen bireylere ve ailelere biraz rahatlama sa\u011flaman\u0131n yan\u0131 s\u0131ra fark\u0131ndal\u0131\u011f\u0131 art\u0131rmak i\u00e7in \u00e7al\u0131\u015fan organizasyon.<\/p>\n

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

E\u011fer ben iyile\u015firsem, bu d\u00fcnyada te\u015fhis konulan her bir birey i\u00e7in de ayn\u0131s\u0131n\u0131 yapmak istiyorum.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5520,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[],"class_list":["post-5519","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Sanjana - 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\/2021\/09\/20\/individual-with-lgmd-sanjana\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Sanjana - 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