{"id":1580,"date":"2017-09-22T12:01:04","date_gmt":"2017-09-22T17:01:04","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1580"},"modified":"2017-09-22T12:01:04","modified_gmt":"2017-09-22T17:01:04","slug":"hillary","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2017\/09\/22\/hillary\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Hillary"},"content":{"rendered":"

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

ADI:<\/strong>\u00a0 Hillary \u00a0\u00a0YA\u015e:<\/strong>\u00a0 32 ya\u015f\u0131nda\"\"<\/a><\/span><\/p>\n

\u00dcLKE:<\/strong>\u00a0 ABD<\/span><\/p>\n

LGMD Alt Tip:<\/strong>\u00a0 LGMD2A \/ Kalpainopati<\/span><\/p>\n

 <\/p>\n

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

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

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

\u0130lk belirtilerim s\u0131k\u0131 a\u015fil tendonlar\u0131, y\u00fcksek kavisler ve yava\u015f bir ko\u015fucu olmamd\u0131. T\u0131pk\u0131 benimle ayn\u0131 zamanda LGMD2A te\u015fhisi konan a\u011fabeyim gibi ko\u015fmaya ba\u015flad\u0131m.<\/span><\/p>\n

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

Evet, a\u011fabeyimde de (5 ya\u015f b\u00fcy\u00fck) LGMD2A var.<\/span><\/p>\n

LGMD ile ya\u015faman\u0131n en b\u00fcy\u00fck zorluklar\u0131n\u0131n ne oldu\u011funu d\u00fc\u015f\u00fcn\u00fcyorsunuz?<\/strong>:<\/span><\/p>\n

LGMD2A ile ilgili en zor \u015fey s\u00fcrekli de\u011fi\u015fiyor olmas\u0131. Ge\u00e7ti\u011fimiz 20 y\u0131l boyunca g\u00fcnl\u00fck g\u00f6revleri yerine getirmek i\u00e7in yarat\u0131c\u0131 yollar buldum. Ba\u011f\u0131ms\u0131z olarak tuvalete gitmek kadar kolay olan g\u00f6revlerin bir\u00e7ok kez ayarlanmas\u0131 ve yeniden yarat\u0131lmas\u0131 gerekti. Bir noktada tuvalette oturur pozisyondan duvara t\u0131rmanmak i\u00e7in \u00f6n kollar\u0131m\u0131, aln\u0131m\u0131 ve tutunma \u00e7ubuklar\u0131n\u0131 kullan\u0131yordum. Hastal\u0131k s\u00fcrekli de\u011fi\u015fti\u011fi i\u00e7in ge\u00e7ici \u00e7\u00f6z\u00fcmlerim ve \"\u00e7\u00f6z\u00fcmlerim\" sadece birka\u00e7 y\u0131l i\u015fe yar\u0131yor ve sonra yeni bir \u015feyler bulmak i\u00e7in \u00e7izim tahtas\u0131na geri d\u00f6n\u00fcyorum.<\/span><\/p>\n

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

Ailem benim en b\u00fcy\u00fck ba\u015far\u0131md\u0131r. Hen\u00fcz 23 ya\u015f\u0131ndayken evlendim, o zamanlar hala \u00e7ok sa\u011flam bir bireydim. Dokuz y\u0131l gibi k\u0131sa bir s\u00fcrede \u015fu anda tam zamanl\u0131 bir tekerlekli sandalye kullan\u0131c\u0131s\u0131y\u0131m. Kocam ve ben iki g\u00fczel \u00e7ocu\u011fu evlat edinme ayr\u0131cal\u0131\u011f\u0131na sahip olduk. Kocam ve iki \u00e7ocu\u011fum benim her \u015feyim. Hayat her zaman kolay de\u011fil, ancak bu \u00fc\u00e7\u00fc yan\u0131mdayken (ya da kuca\u011f\u0131mdayken) hayat\u0131n ger\u00e7ekten ne kadar g\u00fczel oldu\u011funu hat\u0131rl\u0131yorum. Bana ilk te\u015fhis konuldu\u011funda hep \u00e7ocuklar\u0131m\u0131n pe\u015finden nas\u0131l ko\u015faca\u011f\u0131m ya da onlar\u0131 soka\u011fa ka\u00e7maktan nas\u0131l kurtaraca\u011f\u0131m diye endi\u015felenirdim. Kendimi tekerlekli sandalyede onlar\u0131 kovalarken hi\u00e7 hayal etmemi\u015ftim! Tekerlekli sandalyelerin saatte 7 mile kadar h\u0131z yapabildi\u011fini biliyor muydunuz?! Me\u011fer endi\u015felenecek bir \u015fey yokmu\u015f. Evden yar\u0131 zamanl\u0131 \u00e7al\u0131\u015fabiliyorum ve bir e\u015f ve anne olarak sorumluluklar\u0131m\u0131 dengeleyebiliyorum.<\/span><\/p>\n

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

13 ya\u015f\u0131ndayken basketbol, voleybol ve softbol oynuyordum. Spor benim her \u015feyimdi. Tahmin edebilece\u011finiz gibi, te\u015fhis tam bir \u015foktu ve bir s\u00fcre inkar ettim. JV voleybol tak\u0131m\u0131 se\u00e7meleri s\u0131ras\u0131nda ko\u00e7lar\u0131m\u0131n devam edemeyece\u011fimi d\u00fc\u015f\u00fcnmesi beni tamamen \u015foke etti. Oynamama izin verdiler ama sezon sonunda tak\u0131m arkada\u015flar\u0131m kadar h\u0131zl\u0131 olmad\u0131\u011f\u0131m ger\u00e7e\u011fini kabullenmi\u015ftim. Bu durum beni olduk\u00e7a duygusal olarak etkiledi. Neyse ki ailemin ve arkada\u015flar\u0131m\u0131n etkisiyle yeni \u015feyler denemeye karar verdim ve \u00f6\u011frenci y\u00f6netimine aday oldum ve y\u0131ll\u0131k ekibinde edit\u00f6rl\u00fck yapt\u0131m. Me\u015fgul olmak bana yard\u0131mc\u0131 oldu ve sevdi\u011fim yeni \u015feyler buldum. Ya\u015fad\u0131\u011f\u0131m deneyimler ve f\u0131rsatlar \u00fcniversite i\u00e7in burs almama yard\u0131mc\u0131 oldu ve \u00fcniversite kamp\u00fcs\u00fcmde daha fazla liderlik f\u0131rsat\u0131na yol a\u00e7t\u0131. Ayr\u0131ca, son 14 y\u0131ld\u0131r otelcilik sekt\u00f6r\u00fcnde \u00e7al\u0131\u015fma f\u0131rsat\u0131m oldu ve \u015fimdi evden \u00e7al\u0131\u015fmama izin veren bir pozisyonum var. Me\u015fgul olmak her zaman ruh sa\u011fl\u0131\u011f\u0131m i\u00e7in en iyi ila\u00e7lardan biri olmu\u015ftur ve d\u00fcr\u00fcst olmak gerekirse me\u015fgul olmad\u0131\u011f\u0131m bir zaman\u0131 hat\u0131rlam\u0131yorum!<\/span><\/p>\n

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

Nadir hastal\u0131klar i\u00e7in fark\u0131ndal\u0131k yaratmak asla kolay bir i\u015f de\u011fildir. \u0130tfaiyecileri Botu Doldururken ya da Shamrock'lar\u0131 yerel i\u015fletmelerde g\u00f6rd\u00fc\u011f\u00fcn\u00fczde l\u00fctfen ba\u011f\u0131\u015f yapmaya devam edin. Bu para ara\u015ft\u0131rmalar\u0131n ilerlemesine ve \u00e7ocuklar\u0131n MDA kamp\u0131na g\u00f6nderilmesine yard\u0131mc\u0131 oluyor. Bug\u00fcn yap\u0131lan ara\u015ft\u0131rmalar\u0131n hayatlar\u0131 de\u011fi\u015ftirece\u011fine dair umudum var.<\/span><\/p>\n

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

Yapaca\u011f\u0131m ilk \u015fey \u00e7ocuklar\u0131m\u0131n pe\u015finden ko\u015fmak, onlar\u0131 havaya f\u0131rlatmak ve ba\u015f\u0131m d\u00f6nene kadar oynamak olurdu!<\/span><\/p>\n

 <\/p>\n

* * * Daha fazla \"LGMD Spotlight R\u00f6portaj\u0131\" okumak veya gelecek bir r\u00f6portajda yer almak i\u00e7in g\u00f6n\u00fcll\u00fc olmak i\u00e7in l\u00fctfen web sitemizi ziyaret edin<\/span> \u00a0https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>\n

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

LGMD \u201cSPOTLIGHT INTERVIEW\u201d NAME:\u00a0 Hillary \u00a0\u00a0AGE:\u00a0 32 yrs. old COUNTRY:\u00a0 […]<\/p>","protected":false},"author":1,"featured_media":1579,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-1580","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a-calpainopathy-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Hillary - 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\/2017\/09\/22\/hillary\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Hillary - 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