{"id":3577,"date":"2020-09-08T12:49:38","date_gmt":"2020-09-08T17:49:38","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3577"},"modified":"2024-02-09T14:24:31","modified_gmt":"2024-02-09T14:24:31","slug":"rasha-el-sherif","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/clinic-staff\/2020\/09\/08\/rasha-el-sherif\/","title":{"rendered":"PERSONEL KLINIKI LGMD: Rasha El Sherif"},"content":{"rendered":"
\n
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Personel kliniki LGMD:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong>Dr Rasha El Sherif MD, PHD<\/strong><\/p>\n

Afiliacja: Myocare National Foundation<\/strong><\/p>\n

Rola lub stanowisko: D<\/strong>irektor<\/strong><\/p>\n

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

Uko\u0144czy\u0142em studia doktoranckie z neurologii na Uniwersytecie Ain Shams w Egipcie.<\/p>\n

Uzyska\u0142em stypendium w National Institute of Neuroscience, NCNP w Tokio, Japonia, gdzie uko\u0144czy\u0142em prac\u0119 doktorsk\u0105 w zakresie diagnostyki genetycznej chor\u00f3b mi\u0119\u015bni<\/p>\n

\u00a0Zosta\u0142em przeszkolony w NCNP pod nadzorem prof. Ikuya Nonaka w zakresie diagnostyki i leczenia chor\u00f3b mi\u0119\u015bni.<\/p>\n

Ponadto odby\u0142em szkolenie w zakresie pracy nad rejestrem NMD w biurze TREAT-NMD na Uniwersytecie Newcastle.<\/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

W regionie brakowa\u0142o wyspecjalizowanych o\u015brodk\u00f3w mi\u0119\u015bniowych i specjalist\u00f3w medycznych w tej dziedzinie, uwa\u017cam, \u017ce ka\u017cdy pacjent ma prawo do ostatecznej diagnozy i odpowiedniego leczenia, nawet je\u015bli nie ma jeszcze dost\u0119pnych terapii. Dystrofia mi\u0119\u015bniowa nie oznacza, \u017ce pacjenci powinni pozosta\u0107 w swoich domach bez opieki. Bardzo frustruj\u0105ce by\u0142o dowiedzie\u0107 si\u0119, \u017ce lekarze m\u00f3wili rodzinom, aby zrezygnowa\u0142y ze swojego dziecka z chorob\u0105 mi\u0119\u015bni, aby pozostawi\u0142y je bez odpowiedniego leczenia lub edukacji i zacz\u0119\u0142y my\u015ble\u0107 o urodzeniu kolejnego dziecka! Obserwowanie pacjent\u00f3w cierpi\u0105cych na problemy z sercem lub uk\u0142adem oddechowym w wyniku choroby, z powodu braku diagnozy i wczesnego w\u0142a\u015bciwego leczenia, zainspirowa\u0142o mnie do edukowania rodzin, podnoszenia \u015bwiadomo\u015bci i zapewnienia odpowiednich standard\u00f3w opieki nad pacjentami. Co wi\u0119cej, znalezienie firm farmaceutycznych, kt\u00f3re chcia\u0142y rozpocz\u0105\u0107 badania kliniczne \/ badania historii naturalnej na pacjentach, niech\u0119tnie w\u0142\u0105cza\u0142y egipskich i arabskich pacjent\u00f3w z powodu braku specjalistycznej opieki medycznej w regionie. To wszystko sprawi\u0142o, \u017ce by\u0142em bardziej zdeterminowany do pracy w zakresie us\u0142ug dla pacjent\u00f3w i opieki klinicznej w dystrofii mi\u0119\u015bniowej.<\/p>\n

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

Kieruj\u0119 specjalistycznym centrum chor\u00f3b mi\u0119\u015bni, kt\u00f3re diagnozuje pacjent\u00f3w z Egiptu, regionu arabskiego i afryka\u0144skiego. Wykonuj\u0119 r\u00f3wnie\u017c biopsje mi\u0119\u015bni, analizy genetyczne i oferuj\u0119 plan leczenia obejmuj\u0105cy terapi\u0119 wspomagaj\u0105c\u0105, rehabilitacj\u0119 i p\u00f3\u0142roczne kontrole kardiologiczne i oddechowe.<\/p>\n

W 2012 roku zosta\u0142em koordynatorem egipskiego rejestru chor\u00f3b nerwowo-mi\u0119\u015bniowych. W ci\u0105gu ostatnich 10 lat prowadzi\u0142em wiele lokalnych konwoj\u00f3w u\u015bwiadamiaj\u0105cych, aby dotrze\u0107 do pacjent\u00f3w w odleg\u0142ych rejonach Egiptu.<\/p>\n

Ponadto w 2019 r. za\u0142o\u017cy\u0142em fundacj\u0119 pozarz\u0105dow\u0105 zajmuj\u0105c\u0105 si\u0119 dystrofi\u0105 mi\u0119\u015bniow\u0105, kt\u00f3rej celem jest wspieranie pacjent\u00f3w z chorobami mi\u0119\u015bni, zach\u0119canie do bada\u0144 nad LGMD i utworzenie biobanku chor\u00f3b mi\u0119\u015bni. Mam nadziej\u0119, \u017ce gdy b\u0119dziemy mie\u0107 wystarczaj\u0105ce fundusze, w przysz\u0142o\u015bci b\u0119dziemy mogli zapewni\u0107 wsparcie wszystkim pacjentom z LGMD w regionie.<\/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

Zdiagnozowanie ponad 1000 przypadk\u00f3w w ci\u0105gu ostatnich lat, a tak\u017ce edukowanie pacjent\u00f3w na temat ich schorze\u0144 pomog\u0142o zmieni\u0107 ich spojrzenie na chorob\u0119 i sprawi\u0107, \u017ce zacz\u0119li radzi\u0107 sobie z powik\u0142aniami i oczekiwa\u0107 mo\u017cliwych terapii.<\/p>\n

Pacjenci z LGMD potrzebuj\u0105 odpowiedniego wsparcia. Mamy teraz pasjonata LGMD, kt\u00f3ry uko\u0144czy\u0142 szko\u0142\u0119 medyczn\u0105 i zacz\u0105\u0142 z nami wsp\u00f3\u0142pracowa\u0107, im wi\u0119cej diagnozujemy pacjent\u00f3w z LGMD w naszym regionie, tym lepiej rozumiemy natur\u0119 choroby, pomagaj\u0105c promowa\u0107 badania w tej dziedzinie. Pokrewie\u0144stwo jest bardzo popularne w naszym regionie, dlatego widzimy rodziny z ponad 30 pacjentami cierpi\u0105cymi na t\u0119 sam\u0105 mutacj\u0119, z nieco innymi fenotypami. I wci\u0105\u017c wielu pacjent\u00f3w bez jednoznacznej diagnozy. Moim zdaniem ten obszar wymaga dalszych bada\u0144.<\/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

Diagnoza jest kamieniem w\u0119gielnym dla lepszej opieki nad pacjentem i bada\u0144. LGMD jest og\u00f3ln\u0105 diagnoz\u0105 i nie jest ju\u017c dopuszczalne, aby pacjenci nie wiedzieli, na jaki typ LGMD cierpi\u0105. Choroby, na kt\u00f3re nie ma obecnie dost\u0119pnych terapii, nadal wymagaj\u0105 leczenia i dalszej opieki. Dysponuj\u0105c wi\u0119kszymi zasobami i funduszami, byliby\u015bmy w stanie obj\u0105\u0107 opiek\u0105 wszystkich pacjent\u00f3w z LGMD w regionie i pom\u00f3c im w lepszym \u017cyciu oraz promowa\u0107 badania nad t\u0105 chorob\u0105.<\/p>\n

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

Nieustannie inspiruj\u0105 mnie moi pacjenci, kt\u00f3rzy s\u0105 na tyle wytrwali, aby kontynuowa\u0107 edukacj\u0119 i karier\u0119, pokonuj\u0105c wszystkie przeszkody w naszej spo\u0142eczno\u015bci. Matki, kt\u00f3re regularnie przyprowadzaj\u0105 swoje nastoletnie dzieci do kliniki na badania kontrolne. Czuj\u0119 si\u0119 najbardziej zadowolona, gdy pomagam pacjentom w uzyskaniu diagnozy i gdy w ko\u0144cu rozumiej\u0105 sw\u00f3j stan po latach chodzenia do r\u00f3\u017cnych specjalist\u00f3w bez jednoznacznej diagnozy. Chocia\u017c kiedy zacz\u0105\u0142em pracowa\u0107 w tej dziedzinie 20 lat temu, pacjenci w moim kraju bardzo niech\u0119tnie si\u0119gali po diagnoz\u0119 lub leczenie, jednak teraz, gdy zatwierdzono nowe terapie genetyczne, zaczyna si\u0119 to zmienia\u0107.<\/p>\n

JAKI JEST JEDEN WYJ\u0104TKOWY FAKT O TOBIE, KT\u00d3REGO NIE ZNA WIELE INNYCH OS\u00d3B?<\/strong><\/p>\n

W 2017 roku zdiagnozowano u mnie raka, a jedn\u0105 z rzeczy, kt\u00f3re najbardziej pomog\u0142y mi przetrwa\u0107 i ka\u017cdego dnia popycha\u0142y mnie coraz bardziej, by\u0142y wiadomo\u015bci i modlitwy, kt\u00f3re otrzymywa\u0142em od moich pacjent\u00f3w, kt\u00f3rzy prosili mnie o jak najszybszy powr\u00f3t do kliniki, aby im pom\u00f3c.<\/p>\n

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

Pacjenci musz\u0105 zrozumie\u0107 znaczenie w\u0142a\u015bciwej diagnozy, wykorzystuj\u0105c w tym celu odpowiednie narz\u0119dzia, takie jak rezonans magnetyczny, biopsja mi\u0119\u015bni i analiza genetyczna. Jak r\u00f3wnie\u017c zaakceptowa\u0107 znaczenie zarz\u0105dzania, takiego jak rehabilitacja, wsparcie psychologiczne i dalsze dzia\u0142ania, nawet je\u015bli nie ma ostatecznych terapii dla konkretnych chor\u00f3b. \u017bycie jest warte prze\u017cycia i walki o nie.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":4490,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[105,106],"tags":[],"class_list":["post-3577","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: Rasha El Sherif - 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\/2020\/09\/08\/rasha-el-sherif\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD CLINIC STAFF: Rasha El Sherif - 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