{"id":3783,"date":"2021-01-12T09:57:43","date_gmt":"2021-01-12T15:57:43","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3783"},"modified":"2024-02-09T14:24:23","modified_gmt":"2024-02-09T14:24:23","slug":"lgmd-clinic-staff-ursula-moore","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/clinic-staff\/2021\/01\/12\/lgmd-clinic-staff-ursula-moore\/","title":{"rendered":"LGMD KLI\u0307NI\u0307K PERSONELI\u0307: Ursula Moore"},"content":{"rendered":"

\"\"<\/a><\/p>\n

LGMD Klinik Personeli: Ursula Moore<\/strong><\/p>\n

Ba\u011fl\u0131l\u0131k:\u00a0 \u00a0\u00a0 <\/strong>John Walton Musk\u00fcler Distrofi Ara\u015ft\u0131rma Merkezi<\/p>\n

Rol veya Pozisyon: \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong>T\u0131p Doktoru ve Doktora Aday\u0131<\/p>\n

\u015eu anki pozisyonunuza gelmek i\u00e7in hangi e\u011fitim ve \u00f6\u011fretimi ald\u0131n\u0131z?<\/strong><\/p>\n

Cambridge \u00dcniversitesi'nde t\u0131p fak\u00fcltesine devam ettim ve ayn\u0131 zamanda y\u00fcksek lisans yapt\u0131m. Bunu Newcastle-Upon-Tyne ve Merseyside'da yeti\u015fkin ve pediatrik t\u0131p alan\u0131nda gen\u00e7 doktor e\u011fitimi izledi.<\/p>\n

Sizi \u00f6zellikle kas distrofisinde hasta hizmetleri ve klinik bak\u0131m alan\u0131nda kariyer yapmaya y\u00f6nlendiren neydi?<\/strong><\/p>\n

John Walton Merkezi'ne ilk y\u0131llar\u0131mda yeni mezun bir doktor olarak kat\u0131ld\u0131m, daha sonra e\u011fitimimi tamamlamak i\u00e7in ayr\u0131ld\u0131m ve ekibe geri d\u00f6nd\u00fcm. \u0130nsanlar\u0131n ya\u015famlar\u0131nda ger\u00e7ek bir fark yaratabilecek ara\u015ft\u0131rmalar\u0131n bir par\u00e7as\u0131 olmak istedim ve kas distrofisinde insanlar\u0131n daha kolay ve daha rahat ya\u015famalar\u0131na ger\u00e7ekten yard\u0131mc\u0131 olacak ilerlemeler kaydetmek i\u00e7in \u00e7ok fazla potansiyel oldu\u011funu hissettim.<\/p>\n

En \u00e7ok hangi klinik destek veya hasta bak\u0131m alanlar\u0131yla ilgileniyorsunuz?<\/strong><\/p>\n

Fizyoterapistler ve uzman hem\u015firelerden olu\u015fan harika bir ekiple birlikte hastalar\u0131 klinik bak\u0131mlar\u0131n\u0131n bir par\u00e7as\u0131 olarak ayakta muayene ediyorum. Hastalar\u0131m\u0131z\u0131 tan\u0131maktan ve durumlar\u0131na ve ya\u015fam tarzlar\u0131na g\u00f6re onlara yard\u0131mc\u0131 olacak stratejiler d\u00fc\u015f\u00fcnmekten keyif al\u0131yorum. Ayr\u0131ca klinik deney \u00e7al\u0131\u015fmalar\u0131na da kat\u0131l\u0131yorum - yeni ila\u00e7lar\u0131n veya di\u011fer tedavilerin deneylerinde yer alan hastalar\u0131 g\u00f6r\u00fcyorum.<\/p>\n

\u015eu anda Disferlinopatili hastalarla \u00e7al\u0131\u015farak doktora yap\u0131yorum ve baz\u0131 insanlar\u0131n di\u011ferlerinden \u00e7ok daha \u00e7abuk k\u00f6t\u00fcle\u015fmesine neyin sebep oldu\u011funu belirlemeye \u00e7al\u0131\u015f\u0131yorum. Bu, Disferlinopati'de klinik sonu\u00e7 \u00e7al\u0131\u015fmas\u0131 ad\u0131 verilen b\u00fcy\u00fck bir \u00e7al\u0131\u015fman\u0131n par\u00e7as\u0131.<\/p>\n

\u00c7al\u0131\u015fmalar\u0131n\u0131z hastalara nas\u0131l yard\u0131mc\u0131 oluyor? LGMD Hasta Bak\u0131m\u0131n\u0131n gelece\u011fi hakk\u0131nda sizi en \u00e7ok heyecanland\u0131ran ve en tutkulu oldu\u011funuz konu nedir?<\/strong><\/p>\n

G\u00fcnl\u00fck klinik \u00e7al\u0131\u015fmalar\u0131m, bir tan\u0131ya ula\u015fma ve ard\u0131ndan hastalar\u0131n ya\u015fad\u0131\u011f\u0131 bir\u00e7ok semptomun anla\u015f\u0131lmas\u0131n\u0131 ve a\u00e7\u0131klanmas\u0131n\u0131 sa\u011flama ve bu sorunlar aras\u0131nda bir yol bulmaya yard\u0131mc\u0131 olma a\u00e7\u0131s\u0131ndan hastalara yard\u0131mc\u0131 oluyor.<\/p>\n

Doktora ara\u015ft\u0131rmam\u0131n, klinisyenlerin disferlinopatili bir hastada ne olaca\u011f\u0131n\u0131 tahmin edebilmelerini sa\u011flayaca\u011f\u0131n\u0131 umuyorum; b\u00f6ylece yeni tedaviler geli\u015ftirildik\u00e7e daha h\u0131zl\u0131 bir \u015fekilde onaylanabilecek ve bunlardan ger\u00e7ekten faydalanacak hastalara ula\u015fabilecekler.<\/p>\n

Ayr\u0131ca LGMD'li kad\u0131nlar\u0131n hamilelik deneyimlerini inceleyen bir proje \u00fczerinde \u00e7al\u0131\u015f\u0131yorum ve bunun doktorlar\u0131n LGMD'li kad\u0131nlar\u0131n hamile kald\u0131klar\u0131nda neler ya\u015fad\u0131klar\u0131n\u0131 daha iyi anlamalar\u0131n\u0131 ve gelecekte hamile kalmay\u0131 umut eden kad\u0131nlara daha iyi tavsiyelerde bulunmalar\u0131n\u0131 sa\u011flayaca\u011f\u0131n\u0131 umuyorum.<\/p>\n

Hastalar\u0131n ve LGMD ile ilgilenen di\u011fer ki\u015filerin LGMD hastalar\u0131na hizmet veren NMD klinikleri hakk\u0131nda ne bilmelerini istersiniz?<\/strong><\/p>\n

LGMD hastalar\u0131n\u0131 g\u00f6ren NMD klinikleri, LGMD konusunda uzman olan ve farkl\u0131 LGMD'lere sahip \u00e7ok say\u0131da hasta g\u00f6rm\u00fc\u015f olan doktorlar\u0131, fizyoterapistleri ve uzman hem\u015fireleri g\u00f6rme f\u0131rsat\u0131 sunar. Bu, bir tan\u0131ya ula\u015fmada veya semptomlar\u0131 y\u00f6netmenin ya da hastan\u0131n ya\u015fam kalitesini iyile\u015ftirmenin yollar\u0131n\u0131 \u00f6nermede genellikle uzman uzmanl\u0131k sa\u011flayabilecekleri anlam\u0131na gelir.<\/p>\n

Bu klinikler genellikle \u00e7ok say\u0131da ara\u015ft\u0131rma faaliyetiyle de ba\u011flant\u0131l\u0131d\u0131r, b\u00f6ylece yeni tedavilerin klinik \u00e7al\u0131\u015fmalar\u0131 ba\u015flat\u0131l\u0131rsa, NMD klinikleri genellikle erken haberdar olur ve klinik bir izlemeye kat\u0131l\u0131m i\u00e7in bir merkez haline gelebilir.<\/p>\n

Bu alanda \u00e7al\u0131\u015fmaya devam etmek i\u00e7in size ilham veren nedir? <\/strong><\/p>\n

Fikirlerimi takip etmeme ve iyi ara\u015ft\u0131rmalar yapmama olanak sa\u011flayan tutkulu bir grup klinisyen ve destek personeli ile \u00e7al\u0131\u015ft\u0131\u011f\u0131m i\u00e7in \u00e7ok \u015fansl\u0131y\u0131m. Bununla birlikte, en b\u00fcy\u00fck ilham\u0131 hastalar sa\u011fl\u0131yor - b\u00fcy\u00fck zorluklara ra\u011fmen g\u00f6rd\u00fc\u011f\u00fcm\u00fcz LGMD hastalar\u0131n\u0131n \u00e7o\u011funun dayan\u0131kl\u0131l\u0131\u011f\u0131 ve pozitifli\u011fi beni s\u00fcrekli hayrete d\u00fc\u015f\u00fcr\u00fcyor ve durumlar\u0131n\u0131 bir \u015fekilde iyile\u015ftirmeye yard\u0131mc\u0131 olabilmek m\u00fckemmel bir motivasyon kayna\u011f\u0131.<\/p>\n

Sizinle ilgili di\u011fer bir\u00e7ok insan\u0131n bilmedi\u011fi benzersiz bir ger\u00e7ek nedir?<\/strong><\/p>\n

Hem yoku\u015f a\u015fa\u011f\u0131 hem de yoku\u015f yukar\u0131 kayak yapmay\u0131 seviyorum ve son 3 y\u0131ld\u0131r \u0130ngiliz kayak da\u011fc\u0131l\u0131\u011f\u0131 \u015fampiyonuyum.<\/p>\n

Hastalar sizi nas\u0131l te\u015fvik edebilir ve \u00e7al\u0131\u015fmalar\u0131n\u0131za nas\u0131l yard\u0131mc\u0131 olabilir?<\/strong><\/p>\n

Hastalar LGMD ara\u015ft\u0131rmalar\u0131n\u0131n her a\u015famas\u0131na dahil olabilirler. Elbette hastalar\u0131n ara\u015ft\u0131rmalarda yer almas\u0131na ve anketleri yan\u0131tlamas\u0131na veya bunu yapmak isteyip istemediklerini d\u00fc\u015f\u00fcnmelerine ihtiyac\u0131m\u0131z var. Bununla birlikte, hastalar\u0131 en ba\u015f\u0131ndan itibaren dahil etmeyi seviyorum ve hastalar\u0131n \u00f6nemli oldu\u011funu d\u00fc\u015f\u00fcnd\u00fckleri ara\u015ft\u0131rma alanlar\u0131na ili\u015fkin \u00f6nerileriyle ilgileniyorum - \u00f6rne\u011fin, hamilelik ara\u015ft\u0131rmam klinikteki hastalar\u0131n cevaplayamad\u0131\u011f\u0131m sorular\u0131 \u00fczerine ba\u015flad\u0131. Ara\u015ft\u0131rmalar\u0131m ba\u015flamadan \u00f6nce veya anketler g\u00f6nderilmeden \u00f6nce hastalar taraf\u0131ndan g\u00f6zden ge\u00e7irilerek Jargonla dolu olmad\u0131klar\u0131ndan ve hastalar i\u00e7in \u00f6nemli alanlar\u0131 kapsad\u0131klar\u0131ndan emin olunuyor. Bu t\u00fcr bir inceleme, hastalar\u0131n ya\u015fam kalitesine fayda sa\u011flayacak ilgili ara\u015ft\u0131rmalara sahip olmak i\u00e7in \u00e7ok \u00f6nemlidir ve hastalar ilgileniyorsa, hasta temsilcisi olarak hay\u0131r kurumlar\u0131na kat\u0131lmak veya klinisyeninize yard\u0131mc\u0131 olmaktan mutluluk duyaca\u011f\u0131n\u0131z\u0131 s\u00f6ylemek, yeni ara\u015ft\u0131rmalar\u0131 bilgilendirmek i\u00e7in harika bir yol olabilir.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":4507,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[105,106],"tags":[],"class_list":["post-3783","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-clinic-staff","category-lgmd-clinic-staff-interviews"],"acf":[],"yoast_head":"\nLGMD CLINIC STAFF: Ursula Moore - 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\/clinic-staff\/2021\/01\/12\/lgmd-clinic-staff-ursula-moore\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD CLINIC STAFF: Ursula Moore - 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