{"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\/pt\/clinic-staff\/2020\/09\/08\/rasha-el-sherif\/","title":{"rendered":"EQUIPA DA CL\u00cdNICA LGMD: Rasha El Sherif"},"content":{"rendered":"<div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-1 fusion-flex-container nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-content-wrap\" style=\"max-width:calc( 1400px + 0px );margin-left: calc(-0px \/ 2 );margin-right: calc(-0px \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-0 fusion_builder_column_1_1 1_1 fusion-flex-column\" style=\"--awb-bg-size:cover;--awb-width-large:100%;--awb-margin-top-large:0px;--awb-spacing-right-large:0px;--awb-margin-bottom-large:0px;--awb-spacing-left-large:0px;--awb-width-medium:100%;--awb-spacing-right-medium:0px;--awb-spacing-left-medium:0px;--awb-width-small:100%;--awb-spacing-right-small:0px;--awb-spacing-left-small:0px;\"><div class=\"fusion-column-wrapper fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-text fusion-text-1\"><div class=\"wp-block-image\">\n<figure class=\"aligncenter size-medium\"><img decoding=\"async\" class=\"lazyload wp-image-3578\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27300%27%20height%3D%27225%27%20viewBox%3D%270%200%20300%20225%27%3E%3Crect%20width%3D%27300%27%20height%3D%27225%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2020\/09\/Rasha-El-Sherif-300x225.png\" alt=\"\" \/><\/figure>\n<\/div>\n<p class=\"has-black-color has-text-color\"><strong>Pessoal da Cl\u00ednica LGMD:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><strong>Dr. Rasha El Sherif MD, PHD<\/strong><\/p>\n<p class=\"has-black-color has-text-color\"><strong>Filia\u00e7\u00e3o:     Funda\u00e7\u00e3o Nacional Myocare<\/strong><\/p>\n<p class=\"has-black-color has-text-color\"><strong>Fun\u00e7\u00e3o ou cargo:        D<\/strong><strong>diretor<\/strong><\/p>\n<p class=\"has-black-color has-text-color\"><strong>Que educa\u00e7\u00e3o e forma\u00e7\u00e3o teve para chegar \u00e0 sua posi\u00e7\u00e3o atual?<\/strong><\/p>\n<p class=\"has-black-color has-text-color\">Conclu\u00ed o meu doutoramento em Neurologia na Universidade Ain Shams do Egito.<\/p>\n<p class=\"has-black-color has-text-color\">Obtive uma bolsa de estudo no National Institute of Neuroscience, NCNP, em T\u00f3quio, Jap\u00e3o, onde conclu\u00ed a minha tese de doutoramento em diagn\u00f3stico gen\u00e9tico de doen\u00e7as musculares<\/p>\n<p class=\"has-black-color has-text-color\">\u00a0Recebi forma\u00e7\u00e3o no NCNP, sob a supervis\u00e3o do Prof. Ikuya Nonaka, sobre o diagn\u00f3stico e a gest\u00e3o de doen\u00e7as musculares e.<\/p>\n<p class=\"has-black-color has-text-color\">Al\u00e9m disso, recebi a minha forma\u00e7\u00e3o para trabalhar no registo de DNM no gabinete TREAT-NMD na Universidade de Newcastle.<\/p>\n<p class=\"has-black-color has-text-color\"><strong>O que o levou a seguir uma carreira nos servi\u00e7os aos doentes e nos cuidados cl\u00ednicos, em particular na distrofia muscular?<\/strong><\/p>\n<p class=\"has-black-color has-text-color\">A regi\u00e3o tinha falta de centros especializados em distrofia muscular e de profissionais m\u00e9dicos nesta \u00e1rea. Acredito que todos os doentes t\u00eam o direito de ter um diagn\u00f3stico definitivo e uma gest\u00e3o adequada, mesmo que ainda n\u00e3o existam terapias dispon\u00edveis. Ter distrofia muscular n\u00e3o significa que os doentes devam ficar em casa sem qualquer tratamento ou cuidados. Foi muito frustrante saber que os m\u00e9dicos estavam a dizer \u00e0s fam\u00edlias para desistirem dos seus filhos com doen\u00e7a muscular, para os deixarem sem qualquer tratamento ou educa\u00e7\u00e3o adequados e para come\u00e7arem a pensar em ter outro filho! O facto de ver doentes a sofrer de problemas card\u00edacos ou respirat\u00f3rios em consequ\u00eancia da doen\u00e7a, devido \u00e0 falta de diagn\u00f3stico e de tratamento adequado precoce, inspirou-me a querer educar as fam\u00edlias, sensibiliz\u00e1-las e proporcionar padr\u00f5es de cuidados adequados aos doentes. Al\u00e9m disso, as empresas farmac\u00eauticas que estavam interessadas em iniciar ensaios cl\u00ednicos\/estudos de hist\u00f3ria natural em doentes estavam relutantes em incorporar doentes eg\u00edpcios e \u00e1rabes devido \u00e0 falta de cuidados m\u00e9dicos especializados na regi\u00e3o. Tudo isto fez com que eu ficasse ainda mais determinado a trabalhar nos servi\u00e7os aos doentes e nos cuidados cl\u00ednicos da distrofia muscular.<\/p>\n<p class=\"has-black-color has-text-color\"><strong>Em que \u00e1reas do apoio cl\u00ednico ou dos cuidados aos doentes est\u00e1 mais envolvido?<\/strong><\/p>\n<p class=\"has-black-color has-text-color\">Dirijo um centro especializado em doen\u00e7as musculares que diagnostica pacientes do Egito e da regi\u00e3o \u00e1rabe e africana. Tamb\u00e9m efectuo bi\u00f3psias musculares, an\u00e1lises gen\u00e9ticas e proponho um plano de gest\u00e3o que inclui: terapia de apoio, reabilita\u00e7\u00e3o e acompanhamento semestral para cuidados card\u00edacos e respirat\u00f3rios.<\/p>\n<p class=\"has-black-color has-text-color\">Em 2012, tornei-me o coordenador do registo neuromuscular eg\u00edpcio. E, nos \u00faltimos 10 anos, liderei muitos comboios locais de sensibiliza\u00e7\u00e3o para chegar a doentes em zonas remotas do Egito.<\/p>\n<p class=\"has-black-color has-text-color\">Al\u00e9m disso, em 2019, criei uma funda\u00e7\u00e3o n\u00e3o governamental para a distrofia muscular com o objetivo de apoiar os doentes com doen\u00e7as musculares, incentivar a investiga\u00e7\u00e3o sobre a LGMD e criar um biobanco de doen\u00e7as musculares. Espero que, quando tivermos fundos suficientes, no futuro possa prestar apoio a todos os doentes com LGMD na regi\u00e3o<\/p>\n<p class=\"has-black-color has-text-color\"><strong>Como \u00e9 que o seu trabalho ajuda os pacientes? O que mais o apaixona e o entusiasma em rela\u00e7\u00e3o ao futuro do LGMD Patient Care?<\/strong><\/p>\n<p class=\"has-black-color has-text-color\">O diagn\u00f3stico de mais de 1000 casos nos \u00faltimos anos, bem como a educa\u00e7\u00e3o dos doentes sobre as suas condi\u00e7\u00f5es, ajudaram a mudar a sua vis\u00e3o da doen\u00e7a, fazendo com que come\u00e7assem a gerir as complica\u00e7\u00f5es e a esperar poss\u00edveis terapias.<\/p>\n<p class=\"has-black-color has-text-color\">Os doentes com LGMD precisam do apoio adequado. Temos agora um doente apaixonado pela LGMD que se licenciou em medicina e come\u00e7ou a trabalhar connosco. Quanto mais diagnosticamos doentes com LGMD na nossa regi\u00e3o, mais compreendemos a natureza da doen\u00e7a, ajudando a promover a investiga\u00e7\u00e3o nesta \u00e1rea. A consanguinidade \u00e9 muito popular na nossa regi\u00e3o, pelo que vemos fam\u00edlias com mais de 30 doentes que sofrem da mesma muta\u00e7\u00e3o, com fen\u00f3tipos ligeiramente diferentes. E ainda h\u00e1 muitos doentes sem um diagn\u00f3stico definitivo. Na minha opini\u00e3o, esta \u00e1rea precisa de mais investiga\u00e7\u00e3o.<\/p>\n<p class=\"has-black-color has-text-color\"><strong>O que gostaria que os doentes e outros interessados em LGMD soubessem sobre as cl\u00ednicas NMD que servem doentes com LGMD?<\/strong><\/p>\n<p class=\"has-black-color has-text-color\">O diagn\u00f3stico \u00e9 uma pedra angular para um melhor tratamento dos doentes e para a investiga\u00e7\u00e3o. A LGMD \u00e9 um diagn\u00f3stico geral e j\u00e1 n\u00e3o \u00e9 aceit\u00e1vel que os doentes n\u00e3o saibam que tipo de LGMD t\u00eam. As doen\u00e7as que n\u00e3o disp\u00f5em de terapias actuais continuam a necessitar de tratamento e de cuidados de acompanhamento. Com mais recursos e financiamento, poder\u00edamos abranger todos os doentes de LGMD na regi\u00e3o e ajud\u00e1-los a ter uma vida melhor e a promover a investiga\u00e7\u00e3o sobre a doen\u00e7a.<\/p>\n<p><strong>O que o inspira a continuar a trabalhar neste dom\u00ednio?<\/strong><\/p>\n<p class=\"has-black-color has-text-color\">Inspiro-me continuamente nos meus pacientes que s\u00e3o suficientemente resilientes para continuar a sua educa\u00e7\u00e3o e prosseguir a sua carreira apesar de todos os obst\u00e1culos na nossa comunidade. As m\u00e3es que levam os seus filhos adolescentes \u00e0 cl\u00ednica para os seus acompanhamentos regulares. Sinto-me mais satisfeita quando ajudo os doentes a serem diagnosticados e quando finalmente compreendem a sua doen\u00e7a ap\u00f3s anos de consultas com diferentes especialistas sem um diagn\u00f3stico definitivo. Embora quando comecei a trabalhar nesta \u00e1rea, h\u00e1 20 anos, os doentes no meu pa\u00eds estivessem muito relutantes em pedir um diagn\u00f3stico ou tratamento, agora que foram aprovadas novas terapias gen\u00e9ticas, esta situa\u00e7\u00e3o est\u00e1 a come\u00e7ar a mudar.<\/p>\n<p class=\"has-black-color has-text-color\"><strong>QUAL \u00c9 UM FACTO \u00daNICO SOBRE SI QUE MUITAS OUTRAS PESSOAS N\u00c3O SABEM?<\/strong><\/p>\n<p class=\"has-black-color has-text-color\">Foi-me diagnosticado um cancro em 2017 e uma das coisas que mais me ajudou a sobreviver e que me impulsionou mais e mais todos os dias foram as mensagens e ora\u00e7\u00f5es que recebi dos meus doentes, que me pediam para regressar \u00e0 cl\u00ednica assim que pudesse para os ajudar.<\/p>\n<p class=\"has-black-color has-text-color\"><strong>Como \u00e9 que os doentes o podem encorajar e ajudar no seu trabalho?<\/strong><\/p>\n<p class=\"has-black-color has-text-color\">Os doentes t\u00eam de compreender a import\u00e2ncia de um diagn\u00f3stico correto, utilizando para o efeito as ferramentas certas, como a resson\u00e2ncia magn\u00e9tica, as bi\u00f3psias musculares e a an\u00e1lise gen\u00e9tica.  Al\u00e9m disso, devem aceitar a import\u00e2ncia da gest\u00e3o, como a reabilita\u00e7\u00e3o, o apoio psicol\u00f3gico e o acompanhamento, mesmo que n\u00e3o existam terapias definitivas para doen\u00e7as espec\u00edficas. Vale a pena viver e lutar pela vida.<\/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":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>LGMD 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\/pt\/clinic-staff\/2020\/09\/08\/rasha-el-sherif\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD CLINIC STAFF: Rasha El Sherif - 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