{"id":8006,"date":"2024-04-19T15:18:17","date_gmt":"2024-04-19T15:18:17","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=8006"},"modified":"2024-04-19T15:27:01","modified_gmt":"2024-04-19T15:27:01","slug":"8006","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2024\/04\/19\/8006\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Amanda"},"content":{"rendered":"

\"\"<\/p>\n

\u0130sim<\/strong>: Amanda<\/p>\n

Ya\u015f<\/strong>: 26<\/p>\n

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

LGMD Alt Tipi<\/strong>: LGMD2B\/R2 Dysferlin ile ili\u015fkili<\/p>\n

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

Bana 14 ya\u015f\u0131mda te\u015fhis konuldu.<\/p>\n

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

\u0130lk belirtilerim yakla\u015f\u0131k 20 ya\u015f\u0131ma kadar g\u00f6r\u00fclmedi. Bu, kas zay\u0131fl\u0131\u011f\u0131\/atrofisi belirtilerini ilk kez ger\u00e7ekten fark etmeye ba\u015flad\u0131\u011f\u0131m zamand\u0131r. Bunu daha \u00e7ok merdiven veya \u00e7\u00f6melme gibi v\u00fccudumun alt yar\u0131s\u0131n\u0131 kulland\u0131\u011f\u0131m durumlarda fark ettim. \u015ea\u015f\u0131rt\u0131c\u0131 bir \u015fekilde dizlerimde de ciddi a\u011fr\u0131lar vard\u0131. Art\u0131k onlarda da kas atrofisi oldu\u011funu biliyorum.<\/p>\n

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

Benim 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 zorluklar\u0131m son birka\u00e7 y\u0131lda \u00e7ok de\u011fi\u015fti. Hareket kabiliyetimle ilgili sorunlar\u0131m olsa da hala ayakta durabilecek kadar \u015fansl\u0131y\u0131m.<\/p>\n

\u015eu anda en b\u00fcy\u00fck zorlu\u011fumun \u015fu oldu\u011funu s\u00f6yleyebilirim fiziksel olarak<\/em> alevlenmelerimin ve a\u011fr\u0131lar\u0131m\u0131n \u00f6ng\u00f6r\u00fclemez olmas\u0131. H\u0131zl\u0131 ba\u015flayan yorgunluk, sertlik ve a\u011fr\u0131, zaman zaman \u00e7al\u0131\u015fmay\u0131 ve hayat\u0131 dolu dolu ya\u015famay\u0131 \u00e7ok zorla\u015ft\u0131rabiliyor.<\/p>\n

En b\u00fcy\u00fck zorluklar\u0131m duygusal olarak <\/em>gelece\u011fin gizemi ve ya\u015fam\u0131m boyunca bir tedavi g\u00f6r\u00fcp g\u00f6remeyece\u011fim olurdu. Bu her dakika akl\u0131mdan ge\u00e7iyor. Ayr\u0131ca y\u0131llar boyunca sa\u011fl\u0131k ekiplerimi LGMD konusunda e\u011fitmek i\u00e7in ger\u00e7ekten m\u00fccadele ettim. MD uzmanlar\u0131m\u0131n yan\u0131 s\u0131ra, di\u011fer doktorlar\/hem\u015fireler\/t\u0131bbi personelin genellikle bu hastal\u0131\u011f\u0131n ne oldu\u011fu hakk\u0131nda hi\u00e7bir fikri yok, bu da hasta a\u00e7\u0131s\u0131ndan inan\u0131lmaz derecede yorucu.<\/p>\n

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

LGMD te\u015fhisi konuldu\u011funda, doktorlar CK seviyelerim konusunda endi\u015felendikleri ve daha fazla nas\u0131l bir zarara yol a\u00e7aca\u011f\u0131m\u0131 bilmedikleri i\u00e7in kat\u0131ld\u0131\u011f\u0131m t\u00fcm sporlar\u0131 b\u0131rakmak zorunda kald\u0131m. LGMD 2B 2012 y\u0131l\u0131nda hala inan\u0131lmaz derecede yeniydi. \u00c7ok atletiktim, bu y\u00fczden sporu b\u0131rakmak beni y\u0131kt\u0131. Ama sonra t\u00fcm enerjimi sanat yaratmaya ve sanata olan sevgimi art\u0131rmaya harcamaya karar verdim. Sonunda ilgilendi\u011fim her t\u00fcrl\u00fc sanat formunu buldum ve ard\u0131ndan bir tanesini kariyer olarak s\u00fcrd\u00fcrmeye ba\u015flad\u0131m.<\/p>\n

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

LGMD'nin kariyerimi nas\u0131l etkiledi\u011finin yan\u0131 s\u0131ra, zihniyetimi de \u00e7ok de\u011fi\u015ftirdi\u011fini s\u00f6yleyebilirim. Ne kadar adaletsiz olsa da, ki bu \u00e7ok adaletsiz, LGMD'li bireylerin bu hastal\u0131\u011f\u0131n ortas\u0131nda mutlulu\u011fu bulmak istiyorlarsa zihniyetlerini de\u011fi\u015ftirmekten ba\u015fka se\u00e7enekleri yok. Bu alanda her zaman ruh sa\u011fl\u0131\u011f\u0131m \u00fczerinde \u00e7al\u0131\u015f\u0131yorum ve terapinin ve destekleyici bir toplulu\u011fun oyunun kurallar\u0131n\u0131 de\u011fi\u015ftiren \u00f6nemli unsurlar oldu\u011funu g\u00f6rd\u00fcm.<\/p>\n

Bu y\u00fczden yak\u0131n zamanda bir blog a\u00e7maya karar verdim: HerChronicWellness.com<\/a> Ba\u015fkalar\u0131n\u0131n kronik yolculuklar\u0131n\u0131 biraz daha kolayla\u015ft\u0131rmak i\u00e7in kronik yolculu\u011fumdan anlar\u0131 payla\u015ft\u0131\u011f\u0131m yer. Ayr\u0131ca ba\u015fkalar\u0131n\u0131n da kronik hikayelerini ve tavsiyelerini payla\u015fabilmeleri i\u00e7in bir \"\u00d6ne \u00c7\u0131kanlar\" b\u00f6l\u00fcm\u00fc de ba\u015flat\u0131yorum. L\u00fctfen gidip kontrol etmekten \u00e7ekinmeyin!<\/p>\n

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

D\u00fcnyan\u0131n bilmesini istiyorum her \u015fey<\/em> LGMD hakk\u0131nda! Ama en \u00f6nemlisi zaman\u0131n \u00e7ok \u00f6nemli oldu\u011fu. Bu, tedavisi olmayan ilerleyici bir hastal\u0131kt\u0131r. T\u00fcm LGMD vakalar\u0131 farkl\u0131 g\u00f6r\u00fcn\u00fcyor ve ben kendimi inan\u0131lmaz \u015fansl\u0131 bir vaka olarak g\u00f6r\u00fcyorum. \u0130nsanlar ac\u0131 \u00e7ekiyor ve bir tedavi bulman\u0131n tek yolu fark\u0131ndal\u0131\u011f\u0131 art\u0131rmak ve toplumumuzdaki insanlar\u0131 - doktorlar\u0131m\u0131z\u0131, i\u015f arkada\u015flar\u0131m\u0131z\u0131, arkada\u015flar\u0131m\u0131z\u0131 ve ailelerimizi - e\u011fitmek.<\/p>\n

Ayr\u0131ca d\u00fcnyan\u0131n LGMD'nin herkeste farkl\u0131 g\u00f6r\u00fcnd\u00fc\u011f\u00fcn\u00fc bilmesini isterdim. i\u00e7in<\/em> herkes her g\u00fcn<\/em>. V\u00fccudumun yar\u0131n nas\u0131l hissedece\u011fini garanti edemem ve bunun zaman i\u00e7inde nas\u0131l ilerleyece\u011fini \u00f6ng\u00f6remem. Bir \u015feyi d\u00fcn yapm\u0131\u015f olmam bug\u00fcn de yapabilece\u011fim anlam\u0131na gelmiyor. Ne yaz\u0131k ki v\u00fccudum ortalama bir insana g\u00f6re daha \u00f6ng\u00f6r\u00fclemez.<\/p>\n

E\u011fer LGMD'niz <\/strong>\"<\/strong>yar\u0131n iyile\u015fmi\u015f olsayd\u0131, yapmak isteyece\u011finiz ilk \u015fey ne olurdu?<\/strong>?<\/p>\n

Karar veremiyorum - \u00e7\u00fcnk\u00fc yapmak istedi\u011fim o kadar \u00e7ok \u015fey var ki! Kesinlikle bir kayak gezisi planlard\u0131m. Bir y\u00fcr\u00fcy\u00fc\u015f gezisi planlard\u0131m. K\u00f6pe\u011fimle ko\u015fuya \u00e7\u0131kard\u0131m. Tennessee'deki en iyi arkada\u015f\u0131m\u0131 g\u00f6rmek i\u00e7in 11 saatlik bir yolculuk yapard\u0131m. Disneyland'e gider ve t\u00fcm park\u0131 gezerdim. New York'a bir u\u00e7ak bileti al\u0131r ve t\u00fcm \u015fehri g\u00fcn boyu y\u00fcr\u00fcrd\u00fcm. Arkada\u015flar\u0131mla bir egzersiz kursuna yaz\u0131l\u0131rd\u0131m. Buz patenine gider ve paten kaymay\u0131 \u00f6\u011frenirdim. Bir zamanlar kan\u0131ksad\u0131\u011f\u0131m her \u015feyi ve \u00e7ok daha fazlas\u0131n\u0131 yapard\u0131m.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":8005,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[23,124,16],"class_list":["post-8006","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2b","tag-lgmdr2","tag-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Amanda - 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\/2024\/04\/19\/8006\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Amanda - 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