{"id":5582,"date":"2021-12-12T18:05:10","date_gmt":"2021-12-12T18:05:10","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5582"},"modified":"2024-02-09T14:23:57","modified_gmt":"2024-02-09T14:23:57","slug":"individual-with-lgmd-soralla","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2021\/12\/12\/individual-with-lgmd-soralla\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Soralla"},"content":{"rendered":"

\"Lgmd2a<\/p>\n

LGMD \"Spotlight R\u00f6portaj\u0131\" <\/strong><\/p>\n

N<\/strong>ame<\/strong>: Soralla<\/p>\n

Ya\u015f<\/strong>: 28<\/p>\n

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

LGMD Alt Tipi<\/strong>: LGMD 2A\/R1 calpain 3 ile ili\u015fkili<\/p>\n

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

Bana 23 ya\u015f\u0131mda te\u015fhis konuldu.<\/p>\n

\u0130lk belirtileriniz neydi?<\/strong><\/p>\n

Ba\u015flang\u0131\u00e7taki belirtilerim alt bedenimde hafif bir g\u00fc\u00e7s\u00fczl\u00fckt\u00fc, merdivenleri al\u0131\u015ft\u0131\u011f\u0131m kadar h\u0131zl\u0131 \u00e7\u0131kmak ya da \u00f6zellikle beden e\u011fitimi dersinde avluda otururken yerden kalkmak zordu. Bu belirtilerin 11 ya\u015f\u0131nda ba\u015flad\u0131\u011f\u0131n\u0131 unutmay\u0131n.inci<\/sup> lise son s\u0131n\u0131ftayd\u0131m. Ancak 23 ya\u015f\u0131ma kadar te\u015fhis konulmad\u0131.<\/p>\n

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

Ba\u015fka hi\u00e7bir aile \u00fcyesine LGMD te\u015fhisi konmad\u0131. \u0130ki k\u00fc\u00e7\u00fck karde\u015fim var ve onlar test yapt\u0131rmad\u0131lar ama 23 ya\u015f\u0131n\u0131 ge\u00e7tiler ve \u015fu anda ikisi de iyi durumda.<\/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

Ki\u015fisel olarak benim i\u00e7in en b\u00fcy\u00fck zorluk, d\u00f6n\u00fc\u015fmekte oldu\u011fum ki\u015fiyi kabullenmek. Bunu s\u00f6yl\u00fcyorum \u00e7\u00fcnk\u00fc bazen, ya\u015fad\u0131\u011f\u0131m pek \u00e7ok de\u011fi\u015fikli\u011fin benim se\u00e7imim olmad\u0131\u011f\u0131n\u0131 ve kontrol\u00fcm d\u0131\u015f\u0131nda ger\u00e7ekle\u015fti\u011fini fark ediyorum. Bunlardan biri de kendi ba\u015f\u0131m\u0131n \u00e7aresine bakma ba\u011f\u0131ms\u0131zl\u0131\u011f\u0131m\u0131 yava\u015f yava\u015f kaybetmek. Olduk\u00e7a ba\u011f\u0131ms\u0131z bir ya\u015fam s\u00fcrd\u00fckten ve d\u00fcnyan\u0131n benim i\u00e7in var oldu\u011funu hissettikten sonra, gelecek vizyonumu kaybetme hissine kap\u0131lmak en b\u00fcy\u00fck zorlu\u011fum oldu ve b\u00fcy\u00fck olas\u0131l\u0131kla da olacak.<\/p>\n

En b\u00fcy\u00fck ba\u015far\u0131n\u0131z nedir?<\/strong><\/p>\n

En b\u00fcy\u00fck ba\u015far\u0131m sesimi bulmak. Olmak istedi\u011fim kadar b\u00fcy\u00fck bir savunucu de\u011filim, ancak birka\u00e7 kez kendim ve hikayem hakk\u0131nda konu\u015ftum. Bir YouTube kanal\u0131 kurdum ve hikayemi kendi bak\u0131\u015f a\u00e7\u0131mdan anlatt\u0131m ve ayr\u0131ca bu engelin te\u015fhisi nedeniyle durmu\u015f olan e\u011fitimimi tamamlamak i\u00e7in okula geri d\u00f6nd\u00fc\u011f\u00fcm i\u00e7in kendimle gurur duyuyorum.<\/p>\n

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

Kalbimi, zihnimi ve ruhumu ba\u015fka hi\u00e7bir \u015feyin a\u00e7amayaca\u011f\u0131 \u015fekilde a\u00e7t\u0131. Her zaman \u00e7ok empatik ve b\u00fcy\u00fck bir kalbe sahip oldu\u011fuma inanmak istiyorum ama ne yaz\u0131k ki \u00e7ok zay\u0131f bir kalbim vard\u0131. \u00c7ocukken \u00e7ok zorbal\u0131\u011fa u\u011frad\u0131m ve travma ya\u015fad\u0131m. \u015eimdi bunu ya\u015fad\u0131\u011f\u0131ma g\u00f6re, ge\u00e7mi\u015fte ya\u015fad\u0131klar\u0131m\u0131n kalbimi bu sava\u015fa haz\u0131rlad\u0131\u011f\u0131n\u0131 hissediyorum. Bunu y\u00fcksek sesle ve gururla s\u00f6yl\u00fcyorum \u00e7\u00fcnk\u00fc \u015fu anda duygusal olarak hayal etti\u011fimden daha g\u00fc\u00e7l\u00fcy\u00fcm. Bug\u00fcn gen\u00e7 halimle kendim hakk\u0131nda konu\u015facak olsayd\u0131m, kendime inanamazd\u0131m.<\/p>\n

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

D\u00fcnyan\u0131n bilmesini istiyorum, biz \u00f6nemliyiz. LGMD fiziksel bir engeldir, ancak duygusal, zihinsel ve hatta ruhsal sa\u011fl\u0131\u011f\u0131n\u0131za da zarar verir. Bu y\u00fczden l\u00fctfen ba\u015fkalar\u0131n\u0131n kendi ger\u00e7eklerini, hikayelerini anlatmalar\u0131na yard\u0131mc\u0131 olun ve bir g\u00fcn bir tedavi bulabilece\u011fimize dair umut mesaj\u0131m\u0131z\u0131 d\u00fcnyaya yaymam\u0131za yard\u0131mc\u0131 olun.<\/p>\n

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

Yar\u0131n tedavi olabilseydim, kat\u0131laca\u011f\u0131m ve gidece\u011fim pek \u00e7ok \u015fey, macera, gezi ve etkinlik var. Ama kesinlikle yapmaya devam edece\u011fim bir \u015fey var, o da tedavi edilebilecek herkesin hak etti\u011fi \u015fans\u0131 elde etmesi i\u00e7in savunuculuk yapmak ve \u00e7ok \u00e7al\u0131\u015fmak. \u00c7\u00fcnk\u00fc bununla ya\u015fad\u0131ktan sonra kalk\u0131p hayat\u0131m\u0131 ya\u015fayamam ve hi\u00e7bir \u015fey olmam\u0131\u015f gibi geriye bakamam.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5581,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[70],"class_list":["post-5582","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2a-calpainopathy-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Soralla - LGMD Awareness Foundation<\/title>\n<meta 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