{"id":414,"date":"2015-01-18T22:10:12","date_gmt":"2015-01-19T04:10:12","guid":{"rendered":"http:\/\/mainstay-bg.com\/wp\/?p=148"},"modified":"2015-01-18T22:10:12","modified_gmt":"2015-01-19T04:10:12","slug":"jessica","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2015\/01\/18\/jessica\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Jessica"},"content":{"rendered":"

01\/18\/2015:<\/p>\n

\u0130S\u0130M<\/strong>: Jessica\u00a0\u00a0\u00a0\"LGMD2A<\/a> <\/span><\/p>\n

YA\u015e<\/strong>: 31
\n<\/span><\/p>\n

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

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


\n<\/span>KA\u00c7 YA\u015eINDA TE\u015eHIS KONULDU?<\/strong>:<\/span><\/span>
\n\u00a0Bana 12 ya\u015f\u0131nda Limb Girdle Musk\u00fcler Distrofi te\u015fhisi kondu, ancak 25 ya\u015f\u0131ma kadar 2A ile alt tiplendirilmedim.<\/span><\/span><\/p>\n

\u0130LK BELIRTILERINIZ NEYDI?<\/strong>:
\n\u0130lk ad\u0131mlar\u0131mdan itibaren biraz parmak ucunda y\u00fcr\u00fcme sergiledim, ancak aileme bunu a\u015faca\u011f\u0131m s\u00f6ylendi. Zamanla ayakta durmak ve d\u00fcz y\u00fcr\u00fcmek zorla\u015ft\u0131, ancak merdivenlerden \u00e7\u0131kmakta, ko\u015fmakta, beden e\u011fitimi dersinde aktivite yapmakta ve yerden kalkmakta zorlanmaya ba\u015flad\u0131\u011f\u0131m 8 ya\u015f\u0131ma kadar ba\u015fka bir belirti g\u00f6stermedim.<\/p>\n

LGMD HASTASI OLAN BA\u015eKA AI\u0307LE \u00dcYELERI\u0307NI\u0307Z VAR MI?<\/strong>:
\nHay\u0131r, ailemde bir t\u00fcr Musk\u00fcler Distrofi ile ya\u015fad\u0131\u011f\u0131 bilinen tek ki\u015fi benim.<\/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 Tanr\u0131'n\u0131n l\u00fctfuyla zamanla kabullenip uyum sa\u011flad\u0131\u011f\u0131m bir\u00e7ok y\u00f6n\u00fc oldu\u011fu i\u00e7in \u015f\u00fckrediyorum, ancak hala m\u00fccadele etti\u011fim bir y\u00f6n\u00fc, daha fazla ba\u011f\u0131ms\u0131zl\u0131k arzusu ve normal g\u00fcnl\u00fck g\u00f6revleri yerine getirmek ve yard\u0131m i\u00e7in ba\u015fkalar\u0131na ne \u00f6l\u00e7\u00fcde g\u00fcvenmem gerekti\u011fidir. G\u00f6revleri yerine getirme arzusu ve yetersizli\u011fi, ka\u015f\u0131yamad\u0131\u011f\u0131n\u0131z bir ka\u015f\u0131nt\u0131ya sahip olmak gibidir. \u00c7o\u011fu zaman b\u00fcy\u00fck bir sab\u0131r gerektiriyor ve ben bu sab\u0131rla m\u00fccadele etme e\u011filimindeyim. \u0130\u015fleri daha da karma\u015f\u0131k hale getirmek i\u00e7in, ki\u015finin bazen hissedebilece\u011fi su\u00e7luluk duygusunu da bu kar\u0131\u015f\u0131ma ekleyin. Hem ki\u015finin s\u00fcrekli olarak ba\u015fkalar\u0131n\u0131n yard\u0131m\u0131na ihtiya\u00e7 duydu\u011fu ger\u00e7e\u011fi hem de bak\u0131c\u0131 rol\u00fcnde hizmet verenlerin dikkatli ve anlay\u0131\u015fl\u0131 olmam gereken kendi ihtiya\u00e7lar\u0131, arzular\u0131, g\u00fcndemleri ve s\u0131n\u0131rlamalar\u0131 oldu\u011fu ger\u00e7e\u011fi var.<\/p>\n

EN B\u00dcY\u00dcK BA\u015eARINIZ NEDIR<\/strong>:
\nEn b\u00fcy\u00fck ba\u015far\u0131m doktora program\u0131m\u0131 tamamlamak ve Klinik Psikoloji alan\u0131nda doktora derecemi almak oldu.<\/p>\n

LGMD BUG\u00dcN OLDU\u011eUNUZ KI\u0307\u015eI\u0307YE D\u00d6N\u00dc\u015eMENI\u0307ZDE SI\u0307ZI\u0307 NASIL ETKI\u0307LEDI\u0307?<\/strong>:
\nTanr\u0131, MD ile ya\u015famam\u0131 bir\u00e7ok y\u00f6nden iyilik i\u00e7in kulland\u0131. Bunu bana O'na olan ihtiyac\u0131m\u0131 g\u00f6stermek i\u00e7in kulland\u0131 ve bu da t\u00fcm ya\u015fam\u0131m\u0131 de\u011fi\u015ftirdi. Art\u0131k i\u00e7inde bulundu\u011fum ko\u015fullara ra\u011fmen kal\u0131c\u0131 bir huzura ve sevince sahibim. \"Kendimizi ne kadar zay\u0131f hissedersek, o kadar \u00e7ok yaslan\u0131r\u0131z. Ve ne kadar s\u0131k\u0131 yaslan\u0131rsak, bedenlerimiz t\u00fckenirken bile ruhsal olarak o kadar g\u00fc\u00e7leniriz.\" (J.I. Packer) Tanr\u0131 bana bu sayede ba\u015fka pek \u00e7ok nimet g\u00f6sterdi. Sorun \u00e7\u00f6zme konusunda yarat\u0131c\u0131 oldum ve de\u011fi\u015fikliklere uyum sa\u011flamay\u0131 \u00f6\u011frendim. Ya\u015f\u0131m ilerledik\u00e7e odak noktam\u0131 fiziksel aktiviteden ili\u015fkileri derinle\u015ftirmeye, sanat\u0131 ke\u015ffetmeye ve \u00f6zellikle akademik \u00e7al\u0131\u015fmalar\u0131ma kayd\u0131rd\u0131. Engelli pek \u00e7ok \u00f6zel insanla hayat boyu s\u00fcrecek dostluklar kurdum. Ayr\u0131ca e\u011fitim ve kariyer aray\u0131\u015flar\u0131m\u0131, ba\u015fkalar\u0131n\u0131n engellilikle sa\u011fl\u0131kl\u0131 bir \u015fekilde ba\u015fa \u00e7\u0131kmalar\u0131na yard\u0131mc\u0131 olma umuduna y\u00f6nlendirdi.<\/p>\n

D\u00dcNYANIN LGMD HAKKINDA NE BI\u0307LMESI\u0307NI\u0307 I\u0307STI\u0307YORSUNUZ<\/strong>: LGMD, \u00f6ncelikle omuz ve pelvik ku\u015fak kaslar\u0131n\u0131 etkileyen bir grup bozukluktur. LGMD'nin tan\u0131mlanm\u0131\u015f 20'den fazla farkl\u0131 alt tipi vard\u0131r. LGMD, spesifik genetik mutasyon(lar), ba\u015flang\u0131\u00e7 ya\u015f\u0131, ilerleme h\u0131z\u0131 vb. gibi \u00e7e\u015fitli fakt\u00f6rlere ba\u011fl\u0131 olarak farkl\u0131 g\u00f6r\u00fcnebilir. Bir ki\u015finin LGMD hastas\u0131 oldu\u011funu bile anlayamayabilirsiniz. Ba\u015fka bir ki\u015fiyi g\u00f6rebilir ve sadece farkl\u0131 veya daha yava\u015f y\u00fcr\u00fcd\u00fc\u011f\u00fcn\u00fc d\u00fc\u015f\u00fcnebilirsiniz. Ba\u015fka bir ki\u015finin ise tam zamanl\u0131 olarak tekerlekli sandalye kullanmas\u0131 gerekebilir. Ayn\u0131 alt tipe sahip iki ki\u015fi bile tamamen farkl\u0131 g\u00f6r\u00fcnebilir. \u00d6zellikle sadece g\u00f6rd\u00fcklerinize dayanarak varsay\u0131mlarda bulunmamaya \u00e7al\u0131\u015f\u0131n. En \u00f6nemlisi, d\u00fcnyan\u0131n LGMD'nin bir ceza ya da ac\u0131ma nedeni olmad\u0131\u011f\u0131n\u0131 veya birinin hayat\u0131n\u0131n daha az de\u011ferli ya da ne\u015feli oldu\u011funa inanmak i\u00e7in bir neden olmad\u0131\u011f\u0131n\u0131 bilmesini istiyorum. Tanr\u0131 zor deneyimleri, denemeleri ve ac\u0131lar\u0131 kullanabilir ve kullan\u0131r da<\/p>\n

LGMD HASTALI\u011eINIZ YARIN \"TEDAVI\u0307\" EDI\u0307LEBI\u0307LECEK OLSA, YAPMAK I\u0307STEYECE\u011eI\u0307NI\u0307Z I\u0307LK \u015eEY NE OLURDU?<\/strong> O\u011flumu kuca\u011f\u0131ma almak ve ona s\u0131k\u0131ca sar\u0131larak dola\u015fmak isterdim. Kocamla dans etmek ve onunla bir t\u00fcr a\u00e7\u0131k hava\/sportif\/egzersiz aktivitesini payla\u015fmak isterdim. Ko\u015fmak, z\u0131plamak ve atlamak isterdim... ve t\u00fcm bunlar i\u00e7in Tanr\u0131'ya \u015f\u00fckretmek!<\/p>\n

 <\/p>","protected":false},"excerpt":{"rendered":"

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