{"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\/pl\/clinic-staff\/2021\/01\/12\/lgmd-clinic-staff-ursula-moore\/","title":{"rendered":"PERSONEL KLINIKI LGMD: Ursula Moore"},"content":{"rendered":"

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

Personel kliniki LGMD: Ursula Moore<\/strong><\/p>\n

Przynale\u017cno\u015b\u0107:\u00a0 \u00a0\u00a0 <\/strong>Centrum Bada\u0144 nad Dystrofi\u0105 Mi\u0119\u015bniow\u0105 Johna Waltona<\/p>\n

Rola lub stanowisko: \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong>Lekarz medycyny i doktorant<\/p>\n

Jakie wykszta\u0142cenie i szkolenie zdoby\u0142e\u015b, aby osi\u0105gn\u0105\u0107 obecne stanowisko?<\/strong><\/p>\n

Ucz\u0119szcza\u0142em do szko\u0142y medycznej na uniwersytecie Cambridge, w tym na studia magisterskie. Nast\u0119pnie odby\u0142em szkolenie dla m\u0142odszych lekarzy w zakresie medycyny doros\u0142ych i pediatrii w Newcastle-Upon-Tyne i Merseyside.<\/p>\n

Co sprawi\u0142o, \u017ce wybra\u0142e\u015b karier\u0119 zwi\u0105zan\u0105 z obs\u0142ug\u0105 pacjent\u00f3w i opiek\u0105 kliniczn\u0105, w szczeg\u00f3lno\u015bci w dystrofii mi\u0119\u015bniowej?<\/strong><\/p>\n

Do\u0142\u0105czy\u0142em do Centrum Johna Waltona we wczesnych latach mojej kariery jako \u015bwie\u017co wykwalifikowany lekarz, po czym odszed\u0142em, aby uko\u0144czy\u0107 dalsze szkolenie, a nast\u0119pnie powr\u00f3ci\u0142em do zespo\u0142u. Chcia\u0142em by\u0107 cz\u0119\u015bci\u0105 bada\u0144, kt\u00f3re mog\u0142yby naprawd\u0119 zmieni\u0107 \u017cycie ludzi i czu\u0142em, \u017ce w dystrofii mi\u0119\u015bniowej jest tak du\u017cy potencja\u0142, aby poczyni\u0107 post\u0119py, kt\u00f3re naprawd\u0119 pomog\u0105 ludziom \u017cy\u0107 \u0142atwiej i wygodniej.<\/p>\n

W jakich obszarach wsparcia kliniki lub opieki nad pacjentem jeste\u015b najbardziej zaanga\u017cowany?<\/strong><\/p>\n

Wraz ze wspania\u0142ym zespo\u0142em fizjoterapeut\u00f3w i wyspecjalizowanych piel\u0119gniarek spotykam si\u0119 z pacjentami w celu ich ambulatoryjnego przegl\u0105du w ramach opieki klinicznej. Lubi\u0119 poznawa\u0107 naszych pacjent\u00f3w i wymy\u015bla\u0107 strategie, aby im pom\u00f3c, w oparciu o ich stan i styl \u017cycia. Jestem r\u00f3wnie\u017c zaanga\u017cowany w badania kliniczne - spotykam si\u0119 z pacjentami, kt\u00f3rzy bior\u0105 udzia\u0142 w testach nowych lek\u00f3w lub innych metod leczenia.<\/p>\n

Obecnie robi\u0119 doktorat, pracuj\u0105c z pacjentami z dysferlinopati\u0105, pr\u00f3buj\u0105c ustali\u0107, co sprawia, \u017ce stan niekt\u00f3rych os\u00f3b pogarsza si\u0119 znacznie szybciej ni\u017c innych. Jest to cz\u0119\u015b\u0107 du\u017cego badania zwanego badaniem wynik\u00f3w klinicznych w dysferlinopatii.<\/p>\n

W jaki spos\u00f3b Twoja praca pomaga pacjentom? Co najbardziej Ci\u0119 pasjonuje i ekscytuje w zwi\u0105zku z przysz\u0142o\u015bci\u0105 opieki nad pacjentami LGMD?<\/strong><\/p>\n

Moja codzienna praca w klinice pomaga pacjentom w postawieniu diagnozy, a nast\u0119pnie w zrozumieniu i wyja\u015bnieniu wielu objaw\u00f3w, kt\u00f3rych do\u015bwiadczaj\u0105 pacjenci - i pomaga w poruszaniu si\u0119 po tych problemach.<\/p>\n

Mam nadziej\u0119, \u017ce moje badania doktoranckie pozwol\u0105 klinicystom przewidzie\u0107, co stanie si\u0119 z indywidualnym pacjentem z dysferlinopati\u0105, tak aby w miar\u0119 opracowywania nowych terapii mog\u0142y one by\u0107 szybciej zatwierdzane i dociera\u0107 do pacjent\u00f3w, kt\u00f3rzy naprawd\u0119 na nich skorzystaj\u0105.<\/p>\n

Pracuj\u0119 r\u00f3wnie\u017c nad projektem dotycz\u0105cym do\u015bwiadcze\u0144 kobiet z LGMD zwi\u0105zanych z ci\u0105\u017c\u0105 i mam nadziej\u0119, \u017ce pozwoli to lekarzom lepiej zrozumie\u0107, przez co przechodz\u0105 kobiety z LGMD, gdy s\u0105 w ci\u0105\u017cy i zapewni\u0107 lepsze porady kobietom, kt\u00f3re maj\u0105 nadziej\u0119 zaj\u015b\u0107 w ci\u0105\u017c\u0119 w przysz\u0142o\u015bci.<\/p>\n

Co chcia\u0142by\u015b, aby pacjenci i inne osoby zainteresowane LGMD wiedzia\u0142y o klinikach NMD, kt\u00f3re obs\u0142uguj\u0105 pacjent\u00f3w z LGMD?<\/strong><\/p>\n

Kliniki NMD, kt\u00f3re przyjmuj\u0105 pacjent\u00f3w z LGMD, s\u0105 okazj\u0105 do spotkania si\u0119 z lekarzami, fizjoterapeutami i wyspecjalizowanymi piel\u0119gniarkami, kt\u00f3rzy s\u0105 ekspertami w dziedzinie LGMD i widzieli wielu pacjent\u00f3w z r\u00f3\u017cnymi LGMD. Oznacza to, \u017ce cz\u0119sto mog\u0105 oni zapewni\u0107 specjalistyczn\u0105 wiedz\u0119 w zakresie stawiania diagnozy lub sugerowania sposob\u00f3w radzenia sobie z objawami lub poprawy jako\u015bci \u017cycia pacjent\u00f3w.<\/p>\n

Kliniki te s\u0105 cz\u0119sto r\u00f3wnie\u017c powi\u0105zane z wieloma dzia\u0142aniami badawczymi, wi\u0119c je\u015bli rozpoczynaj\u0105 si\u0119 badania kliniczne nowych metod leczenia, kliniki NMD cz\u0119sto dowiaduj\u0105 si\u0119 o tym wcze\u015bnie i mog\u0105 sta\u0107 si\u0119 o\u015brodkiem rekrutacji na \u015bcie\u017ck\u0119 kliniczn\u0105.<\/p>\n

Co inspiruje Ci\u0119 do dalszej pracy w tej dziedzinie? <\/strong><\/p>\n

Mam szcz\u0119\u015bcie pracowa\u0107 z pe\u0142n\u0105 pasji grup\u0105 klinicyst\u00f3w i personelu pomocniczego, kt\u00f3rzy pozwalaj\u0105 mi realizowa\u0107 moje pomys\u0142y i prowadzi\u0107 dobre badania. Jednak to pacjenci dostarczaj\u0105 mi najwi\u0119kszej inspiracji - jestem nieustannie zdumiony odporno\u015bci\u0105 i pozytywnym nastawieniem wielu pacjent\u00f3w z LGMD, kt\u00f3rych widzimy, pomimo powa\u017cnych trudno\u015bci, a mo\u017cliwo\u015b\u0107 poprawy ich sytuacji w jaki\u015b spos\u00f3b jest doskona\u0142\u0105 motywacj\u0105.<\/p>\n

Jaki jest jeden wyj\u0105tkowy fakt o tobie, kt\u00f3rego nie zna wiele innych os\u00f3b?<\/strong><\/p>\n

Uwielbiam je\u017adzi\u0107 na nartach zar\u00f3wno w d\u00f3\u0142, jak i pod g\u00f3r\u0119, a przez ostatnie 3 lata by\u0142em mistrzem Wielkiej Brytanii w skialpinizmie.<\/p>\n

W jaki spos\u00f3b pacjenci mog\u0105 Ci\u0119 zach\u0119ci\u0107 i pom\u00f3c Ci w pracy?<\/strong><\/p>\n

Pacjenci mog\u0105 by\u0107 zaanga\u017cowani na ka\u017cdym etapie bada\u0144 nad LGMD. Oczywi\u015bcie potrzebujemy, aby pacjenci brali udzia\u0142 w badaniach i odpowiadali na kwestionariusze lub zastanawiali si\u0119, czy chcieliby to zrobi\u0107. Lubi\u0119 jednak anga\u017cowa\u0107 pacjent\u00f3w od samego pocz\u0105tku i jestem zainteresowany sugestiami dotycz\u0105cymi obszar\u00f3w badawczych, kt\u00f3re pacjenci uwa\u017caj\u0105 za wa\u017cne - na przyk\u0142ad moje badania nad ci\u0105\u017c\u0105 rozpocz\u0119\u0142y si\u0119 od pyta\u0144 pacjent\u00f3w w klinice, na kt\u00f3re nie mog\u0142em odpowiedzie\u0107. Moje badania zosta\u0142y zweryfikowane przez pacjent\u00f3w przed ich rozpocz\u0119ciem lub przed wys\u0142aniem kwestionariuszy, aby upewni\u0107 si\u0119, \u017ce nie s\u0105 one pe\u0142ne \u017cargonu i obejmuj\u0105 obszary wa\u017cne dla pacjent\u00f3w. Ten rodzaj przegl\u0105du ma kluczowe znaczenie dla prowadzenia odpowiednich bada\u0144, kt\u00f3re przynios\u0105 korzy\u015bci dla jako\u015bci \u017cycia pacjent\u00f3w, a je\u015bli pacjenci s\u0105 zainteresowani, do\u0142\u0105czenie do organizacji charytatywnych jako przedstawiciel pacjent\u00f3w lub poinformowanie lekarza, \u017ce ch\u0119tnie pomo\u017cesz, mo\u017ce by\u0107 \u015bwietnym sposobem na informowanie o nowych badaniach.<\/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\/pl\/clinic-staff\/2021\/01\/12\/lgmd-clinic-staff-ursula-moore\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD CLINIC STAFF: Ursula Moore - 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