{"id":945,"date":"2015-07-06T10:35:46","date_gmt":"2015-07-06T15:35:46","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=945"},"modified":"2015-07-06T10:35:46","modified_gmt":"2015-07-06T15:35:46","slug":"ramesh","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2015\/07\/06\/ramesh\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Ramesh"},"content":{"rendered":"

07\/06\/2015:<\/strong>\u00a0<\/strong><\/p>\n

\u0130S\u0130M<\/strong>: Ramesh \u00a0YA\u015e<\/strong>: 28 yrs. old\"LGMD2B<\/a>
\n\u00dcLKE<\/strong>: Hindistan
\nLGMD Alt Tipi<\/strong>: LGMD2B \/ Disferlinopati<\/p>\n

KA\u00c7 YA\u015eINDA TE\u015eHIS KONULDU?<\/strong>:
\nSemptomlar 19 ya\u015f\u0131mda ba\u015flad\u0131 ancak 22 ya\u015f\u0131ma kadar te\u015fhis konulamad\u0131.<\/p>\n

\u0130LK BELIRTILERINIZ NEYDI?<\/strong>:
\n\u0130lk belirtim, ofise giderken aniden yere d\u00fc\u015fmemdi. Doktoruma dan\u0131\u015ft\u0131m, fizik tedavi \u00f6nerdi ancak bu pek yard\u0131mc\u0131 olmad\u0131. Bundan sonra, Bangalore'daki (Hindistan) doktora dan\u0131\u015fman\u0131n en iyisi olabilece\u011fini d\u00fc\u015f\u00fcnd\u00fck. Kas ve sinir biyopsisi yapt\u0131rd\u0131m ve iki ay boyunca her bir baca\u011f\u0131m al\u00e7\u0131da kald\u0131. Daha ileri testler i\u00e7in beni bir n\u00f6rolo\u011fa g\u00f6nderdi.<\/p>\n

LGMD HASTASI OLAN BA\u015eKA AI\u0307LE \u00dcYELERI\u0307NI\u0307Z VAR MI?<\/strong>: Hay\u0131r<\/p>\n

LGMD I\u0307LE YA\u015eARKEN KAR\u015eILA\u015eTI\u011eINIZ EN B\u00dcY\u00dcK ZORLUKLARIN NELER OLDU\u011eUNU D\u00dc\u015e\u00dcN\u00dcYORSUNUZ?<\/strong>:
\nLGMD ile ya\u015faman\u0131n en b\u00fcy\u00fck zorlu\u011funun insanlar\u0131n bunu anlamakta zorlanmas\u0131 oldu\u011funu d\u00fc\u015f\u00fcn\u00fcyorum. LGMD'yi birine tarif etmek kolay de\u011fil. Bir\u00e7ok insan bu hastal\u0131\u011fa sahip oldu\u011fum konusunda abartt\u0131\u011f\u0131m\u0131, hatta yalan s\u00f6yledi\u011fimi d\u00fc\u015f\u00fcn\u00fcyor. Hastal\u0131\u011fa ek olarak, eri\u015filebilirlik eksikli\u011fini ve engelli insanlara y\u00f6nelik sosyal tutumlar\u0131 \u00e7ok s\u0131n\u0131rlay\u0131c\u0131 buluyorum. Ke\u015fke insanlar bu hastal\u0131klar hakk\u0131nda bilgi edinmeye ve bu hastal\u0131ktan nas\u0131l kurtulacaklar\u0131n\u0131 anlamaya daha a\u00e7\u0131k olsalar.<\/p>\n

EN B\u00dcY\u00dcK BA\u015eARINIZ NEDIR<\/strong>:
\nEn b\u00fcy\u00fck ba\u015far\u0131m, kendi yolumda \u00e7al\u0131\u015fmay\u0131 ve \u00e7al\u0131\u015fmaya devam etmeyi ba\u015farmakt\u0131r.<\/p>\n

LGMD BUG\u00dcN OLDU\u011eUNUZ KI\u0307\u015eI\u0307YE D\u00d6N\u00dc\u015eMENI\u0307ZDE SI\u0307ZI\u0307 NASIL ETKI\u0307LEDI\u0307?<\/strong>:
\nBana yard\u0131m eden insanlar\u0131n k\u0131ymetini bilmeyi, sab\u0131rl\u0131 olmay\u0131, umutlu olmay\u0131 ve depresyona girmemeyi, her \u015fey i\u00e7in \u015f\u00fckretmeyi, benimle ayn\u0131 durumda olmayan ve zor durumda olan insanlar\u0131 anlamay\u0131, sahip olduklar\u0131m\u0131n de\u011ferini bilmeyi ve tasarruflu olmay\u0131, aileme her g\u00fcn son g\u00fcnm\u00fc\u015f gibi daha fazla sevgi vermeyi \u00f6\u011frendim. Sab\u0131rl\u0131 olmay\u0131 ve herkesin bir yard\u0131m eline ihtiyac\u0131 oldu\u011fu ger\u00e7e\u011fini kabul etmeyi \u00f6\u011frendim!<\/p>\n

D\u00dcNYANIN LGMD HAKKINDA NE BI\u0307LMESI\u0307NI\u0307 I\u0307STI\u0307YORSUNUZ<\/strong>:
\n\u00c7o\u011fu t\u0131p profesyoneli bu durumun fark\u0131nda olmasa bile, bunun fark\u0131nda olmal\u0131 ve hastalara nas\u0131l g\u00fcvenli ve hayata kar\u015f\u0131 meydan okuyucu olacaklar\u0131n\u0131 \u00f6\u011fretmelidirler.<\/p>\n

LGMD HASTALI\u011eINIZ YARIN \"TEDAVI\u0307\" EDI\u0307LEBI\u0307LECEK OLSA, YAPMAK I\u0307STEYECE\u011eI\u0307NI\u0307Z I\u0307LK \u015eEY NE OLURDU<\/strong>:
\n\u00d6ncelikle bana yard\u0131mc\u0131 olan her bir doktoru \u015fahsen tebrik etmek istiyorum. As\u0131l \u00f6nemli olan, bu hastal\u0131k hakk\u0131nda bir blog a\u00e7mak istiyorum ve hastalara hastal\u0131\u011f\u0131n \u00fcstesinden nas\u0131l gelecekleri konusunda rehberlik edip destek olaca\u011f\u0131m. Bu hastal\u0131kla nas\u0131l ac\u0131 \u00e7ekti\u011fimi biliyorum. Ba\u015fkalar\u0131n\u0131n tekrar ac\u0131 \u00e7ekmesine f\u0131rsat vermeyece\u011fim.<\/p>","protected":false},"excerpt":{"rendered":"

07\/06\/2015:\u00a0 NAME: Ramesh \u00a0AGE: 28 yrs. old COUNTRY: India LGMD […]<\/p>","protected":false},"author":1,"featured_media":946,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[21,30,23],"class_list":["post-945","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-dysferlinopathy","tag-india","tag-lgmd2b"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Ramesh<\/title>\n<meta name=\"description\" content=\"Ramesh who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares his 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\/07\/06\/ramesh\/\" \/>\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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