{"id":1378,"date":"2016-10-11T11:29:46","date_gmt":"2016-10-11T16:29:46","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1378"},"modified":"2016-10-11T11:29:46","modified_gmt":"2016-10-11T16:29:46","slug":"anna","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2016\/10\/11\/anna\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Anna"},"content":{"rendered":"

LGMD SPOT R\u00d6PORTAJ<\/strong><\/p>\n

\u0130sim<\/strong>: Anna \u00a0\u00a0Ya\u015f<\/strong>: 36 ya\u015f\u0131nda\"lgmd2i-anna\"<\/a><\/p>\n

\u00dclke<\/strong>: Kanada<\/p>\n

LGMD Alt Tipi<\/strong>: LGMD2I<\/p>\n

 <\/p>\n

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

Bana ilk olarak k\u00fc\u00e7\u00fck bir \u00e7ocukken (ilkokuldayken) \"spesifik olmayan kas miyopatisi\" te\u015fhisi kondu. Hayat\u0131m\u0131n ilerleyen d\u00f6nemlerinde, 26 ya\u015f\u0131ndayken bana LGMD \"\u00e7al\u0131\u015fma te\u015fhisi\" konuldu. Son olarak, 36 ya\u015f\u0131ndayken, genetik testler yoluyla resmi \/ klinik olarak LGMD 2I te\u015fhisi kondu.<\/p>\n

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

\u0130lk belirtilerimin ne oldu\u011fundan tam olarak emin de\u011filim \u00e7\u00fcnk\u00fc do\u011fu\u015ftan bu hastal\u0131\u011fa sahip olmama ra\u011fmen ailem benimle bu konuda hi\u00e7 konu\u015fmad\u0131. Semptomlar\u0131m hayat\u0131m\u0131 t\u0131bbi olarak etkilemedi\u011fi i\u00e7in \u00fczerinde durmaya gerek olmad\u0131\u011f\u0131n\u0131 d\u00fc\u015f\u00fcnd\u00fcler. Geriye d\u00f6n\u00fcp bakt\u0131\u011f\u0131mda - tahmin etmem gerekirse - en erken belirtilerim (hat\u0131rlayabildi\u011fim kadar\u0131yla) ayak parmaklar\u0131mda y\u00fcr\u00fcme ve a\u011fr\u0131yan bald\u0131rlard\u0131. Ayr\u0131ca kros ko\u015fusu ve jimnastik gibi baz\u0131 spor aktivitelerine kolayca kat\u0131lamad\u0131\u011f\u0131m\u0131 da hat\u0131rl\u0131yorum.<\/p>\n

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

Benim \u00fc\u00e7 erkek karde\u015fim var. \u0130lgin\u00e7tir, bana en yak\u0131n ya\u015ftaki iki erkek karde\u015fim LGMD'den etkilenmi\u015f durumda, ancak en k\u00fc\u00e7\u00fck erkek karde\u015fim (yedi ya\u015f k\u00fc\u00e7\u00fck) hi\u00e7 etkilenmedi ve asl\u0131nda son derece atletik.<\/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

Benim i\u00e7in en b\u00fcy\u00fck zorluklardan ilki bu hastal\u0131\u011f\u0131n s\u00fcrekli de\u011fi\u015fen ihtiya\u00e7lar\u0131 - bazen ayak uydurmak zor oluyor! \u00d6rne\u011fin, belli bir i\u015fi tek bir \u015fekilde yapmaya al\u0131\u015f\u0131yorsunuz ve bir g\u00fcn aniden o i\u015fi art\u0131k o \u015fekilde yapamaz hale geliyorsunuz (ya da o i\u015fi art\u0131k hi\u00e7 yapamad\u0131\u011f\u0131n\u0131z\u0131 ke\u015ffedebiliyorsunuz). Ayr\u0131ca, size yard\u0131mc\u0131 olmas\u0131 i\u00e7in bir ekipman sat\u0131n al\u0131rs\u0131n\u0131z ve bir s\u00fcre i\u015fe yarar, ancak daha sonra art\u0131k yard\u0131mc\u0131 olmad\u0131\u011f\u0131 bir yere ula\u015f\u0131rs\u0131n\u0131z ve ya ba\u015fka bir ekipman sat\u0131n alman\u0131z ya da ba\u015fka bir \u015fey d\u00fc\u015f\u00fcnmeniz gerekir.<\/p>\n

LGMD ile ya\u015faman\u0131n benim i\u00e7in ikinci en b\u00fcy\u00fck zorlu\u011fu, bu hastal\u0131\u011f\u0131n gelece\u011finizi nas\u0131l etkileyece\u011fini bilmemek. Her biri farkl\u0131 derecelerde ve oranlarda farkl\u0131 ilerleme g\u00f6steriyor, bu nedenle gelecekteki ihtiya\u00e7lar\u0131n\u0131z\u0131n ne olaca\u011f\u0131n\u0131 tahmin etmek veya herhangi bir gelecek planlamak zor \u00e7\u00fcnk\u00fc fiziksel olarak nas\u0131l bir durumda olaca\u011f\u0131n\u0131z\u0131 bilmiyorsunuz.<\/p>\n

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

Dolu dolu bir hayat ya\u015famak i\u00e7in \u00e7ok \u00e7al\u0131\u015f\u0131yorum, bu y\u00fczden tek bir ba\u015far\u0131 saymak benim i\u00e7in zor. Bazen hastal\u0131kla ya\u015farken sadece yataktan kalkmak bile en b\u00fcy\u00fck ba\u015far\u0131mm\u0131\u015f gibi geliyor J Ciddiyetle s\u00f6ylemek gerekirse, iki \u00e7ocuk annesiyim (biri biyolojik di\u011feri evlatl\u0131k), bu y\u00fczden onlar\u0131n b\u00fcy\u00fcmesini izlemek bana b\u00fcy\u00fck bir keyif veriyor ve muazzam bir ba\u015far\u0131 duygusu ya\u015fat\u0131yor. Ayr\u0131ca yakla\u015f\u0131k on y\u0131l boyunca kilisede rahiplik yapt\u0131m ve bu sayede insanlar\u0131n en zor zamanlar\u0131nda onlarla birlikte yolculuk etme onurunu ya\u015fad\u0131m. Onlara bu zor d\u00f6nemlerinde (az da olsa) yard\u0131mc\u0131 olabildi\u011fimi bilmek bana gurur veriyor.<\/p>\n

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

LGMD hayat\u0131m\u0131 bir\u00e7ok y\u00f6nden etkiledi. Bana \u00e7evreme uyum sa\u011flamay\u0131 \u00f6\u011fretti. Bence bu hastal\u0131kla ya\u015farken do\u011fal olarak kal\u0131plar\u0131n d\u0131\u015f\u0131nda d\u00fc\u015f\u00fcnmeyi \u00f6\u011freniyorsunuz.<\/p>\n

Ayr\u0131ca bana tak\u0131l\u0131p kalmamay\u0131 da \u00f6\u011fretti \u00e7\u00fcnk\u00fc tak\u0131l\u0131p kald\u0131\u011f\u0131n\u0131zda kendinizi 's\u0131k\u0131\u015fm\u0131\u015f' hissedersiniz ki bu ne yararl\u0131 ne de sa\u011fl\u0131kl\u0131d\u0131r. LGMD ayr\u0131ca bana hayattaki t\u00fcm k\u00fc\u00e7\u00fck \u015feyleri takdir etme hediyesini de verdi. En \u00f6nemlisi, LGMD bana kendimi bu kadar ciddiye almama yetene\u011fi kazand\u0131rd\u0131. En k\u00fc\u00e7\u00fck k\u0131z\u0131m bana d\u00fczenli olarak \"\u015fap\u015fal\" oldu\u011fumu s\u00f6yl\u00fcyor ve ben de bundan memnunum - hayat duraksamamak ve iyi bir kahkaha atmamak i\u00e7in \u00e7ok k\u0131sa ve \u00e7ok belirsiz. Hayattaki sloganlar\u0131mdan biri \u015fudur: \"E\u011fer 'A' plan\u0131 i\u015fe yaramazsa, alfabede yirmi be\u015f harf daha var!\" J<\/p>\n

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

Bu hastal\u0131k herkesi farkl\u0131 \u015fekilde etkiler ve ayn\u0131 ki\u015fide bile g\u00fcne ve \u00e7evreye ba\u011fl\u0131 olarak farkl\u0131 \u015fekilde etkiler. Bu, bazen MD'li ki\u015fi i\u00e7in \u00e7ok fazla endi\u015fe olabilece\u011fi anlam\u0131na gelir. Bazen sa\u011fl\u0131kl\u0131 bir ki\u015fi i\u00e7in basit ve s\u0131radan g\u00f6r\u00fcnen bir g\u00f6rev, s\u00fcre\u00e7 ve\/veya fiziksel engeller nedeniyle MD'li bir ki\u015fi i\u00e7in ezici g\u00f6r\u00fcnebilir. D\u00fcnyaya, arkada\u015flar\u0131ma, aileme ve bak\u0131c\u0131lara s\u00f6yleyebilece\u011fim tek \u015fey, MD'li ki\u015fileri sadece fiziksel olarak de\u011fil, duygusal ve psikolojik olarak da sevmenin ve desteklemenin \u00f6nemli oldu\u011fudur - ne hissettiklerini ve neden hissettiklerini tam olarak anlamasan\u0131z bile.<\/p>\n

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

E\u011fer bug\u00fcn uyansayd\u0131m ve hi\u00e7bir semptomum olmasayd\u0131, hi\u00e7 \u015f\u00fcphesiz do\u011frudan sahile giderdim!<\/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: https:\/\/www.lgmd-info.org\/spotlight-interviews<\/p>","protected":false},"excerpt":{"rendered":"

LGMD SPOTLIGHT INTERVIEW Name:\u00a0 Anna \u00a0\u00a0Age: \u00a0\u00a036 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":1376,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,35],"tags":[38,36],"class_list":["post-1378","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2i","tag-canada","tag-lgmd2i"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Anna - 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=\"http:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2016\/10\/11\/anna\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Anna - 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