{"id":967,"date":"2015-07-29T10:25:33","date_gmt":"2015-07-29T15:25:33","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=967"},"modified":"2015-07-29T10:25:33","modified_gmt":"2015-07-29T15:25:33","slug":"patricia","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2015\/07\/29\/patricia\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Patricia"},"content":{"rendered":"

07\/29\/2015:<\/strong><\/p>\n

\u0130S\u0130M<\/strong>: Patricia \u00a0YA\u015e<\/strong>: 26 yrs old\"LGMD2A<\/a><\/p>\n

\u00dcLKE<\/strong>: Birle\u015fik Devletler<\/p>\n

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

 <\/p>\n

KA\u00c7 YA\u015eINDA TE\u015eHIS KONULDU?<\/strong>:<\/p>\n

Bana 12 ya\u015f\u0131ndayken MD te\u015fhisi kondu.<\/p>\n

\u0130LK BELIRTILERINIZ NEYDI?<\/strong>:<\/p>\n

\u0130lk belirtiler parmak ucunda y\u00fcr\u00fcme, kollar\u0131n d\u00fcz gitmemesi, topallayarak y\u00fcr\u00fcme ve kilo alamama idi.<\/p>\n

LGMD HASTASI OLAN BA\u015eKA AILE \u00dcYELERINIZ VAR MI? <\/strong><\/p>\n

Ailemde Musk\u00fcler Distrofi veya LGMD hastas\u0131 yok.<\/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 zorluk Y\u00fcr\u00fcmek, Ko\u015fmak, Yataktan kendi ba\u015f\u0131ma kalkmak, Kendi ba\u015f\u0131ma banyo yapmak, Yemek pi\u015firmek, Ye\u011fenimle yerde oynamak gibi baz\u0131 \u015feyleri yapamamak. Yapt\u0131\u011f\u0131m her \u015fey bir meydan okumad\u0131r.<\/p>\n

EN B\u00dcY\u00dcK BA\u015eARINIZ NEDIR<\/strong>:<\/p>\n

En b\u00fcy\u00fck ba\u015far\u0131m harika bir adamla evlenmek ve umar\u0131m yak\u0131nda bir aile kurmak, ayr\u0131ca elektrikli sandalyemi ald\u0131\u011f\u0131mda ve 2 y\u0131ld\u0131r ilk kez yemek pi\u015firebildi\u011fimde ve kocamla d\u0131\u015far\u0131 \u00e7\u0131kabildi\u011fimde olurdu.<\/p>\n

LGMD BUG\u00dcN OLDU\u011eUNUZ KI\u015eI OLMANIZDA SIZI NASIL ETKILEDI? <\/strong><\/p>\n

Yapabilece\u011fim \u015feyler s\u0131n\u0131rl\u0131 olsa da, do\u011fru ara\u00e7larla bu \u015feylerden baz\u0131lar\u0131n\u0131 farkl\u0131 bir \u015fekilde yapabilece\u011fimi fark etmemi sa\u011flad\u0131.<\/p>\n

D\u00dcNYANIN LGMD HAKKINDA NE BI\u0307LMESI\u0307NI\u0307 I\u0307STI\u0307YORSUNUZ<\/strong>:<\/p>\n

Kendinizi LGMD ve insanlar\u0131n ya\u015fad\u0131\u011f\u0131 baz\u0131 m\u00fccadeleler hakk\u0131nda e\u011fitin. Birini nas\u0131l g\u00f6r\u00fcnd\u00fc\u011f\u00fcne bakarak yarg\u0131lamay\u0131n. Her MD formunun farkl\u0131 bir g\u00f6r\u00fcn\u00fcm\u00fc vard\u0131r ancak bu ki\u015fiyi ki\u015fi yapmaz. Ki\u015fili\u011fi ki\u015fiyi yapar. Tekerlekli sandalyede ya da y\u00fcr\u00fcrken m\u00fccadele eden birini g\u00f6r\u00fcrseniz yard\u0131m teklif edin, benim i\u00e7in birisi bana yard\u0131m edip edemeyece\u011fini sordu\u011funda bunun i\u00e7in \u00e7ok minnettar oldu\u011fumu biliyorum.<\/p>\n

LGMD HASTALI\u011eINIZ YARIN \"TEDAVI\u0307\" EDI\u0307LEBI\u0307LECEK OLSA, YAPMAK I\u0307STEYECE\u011eI\u0307NI\u0307Z I\u0307LK \u015eEY NE OLURDU<\/strong>:<\/p>\n

Yolda ve blokta ko\u015fabildi\u011fim kadar h\u0131zl\u0131 ko\u015fard\u0131m, z\u0131plard\u0131m ve hatta belki taklalar atard\u0131m. Bunu yapabilece\u011fim g\u00fcn\u00fc hayal ediyorum.<\/p>","protected":false},"excerpt":{"rendered":"

07\/29\/2015: NAME: Patricia \u00a0AGE:\u00a0 26 yrs old COUNTRY: United States […]<\/p>","protected":false},"author":1,"featured_media":968,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,16],"class_list":["post-967","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","tag-united-states"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Patricia<\/title>\n<meta name=\"description\" content=\"Patricia who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares her 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\/29\/patricia\/\" \/>\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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