{"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\/tr\/clinic-staff\/2020\/09\/08\/rasha-el-sherif\/","title":{"rendered":"LGMD KLI\u0307NI\u0307K PERSONELI\u0307 Rasha El Sherif"},"content":{"rendered":"
\n
\"\"<\/figure>\n<\/div>\n

LGMD Klinik Personeli:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong>Dr. Rasha El Sherif MD, PHD<\/strong><\/p>\n

Ba\u011fl\u0131 kurulu\u015f: Myocare Ulusal Vakf\u0131<\/strong><\/p>\n

Rol veya Pozisyon: D<\/strong>Y\u00d6NET\u0130C\u0130<\/strong><\/p>\n

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

M\u0131s\u0131r Ain Shams \u00dcniversitesi'nden N\u00f6roloji alan\u0131nda doktora derecemi ald\u0131m.<\/p>\n

Tokyo, Japonya'daki Ulusal Sinirbilim Enstit\u00fcs\u00fc'nde (NCNP) kas hastal\u0131klar\u0131n\u0131n genetik te\u015fhisi \u00fczerine doktora tezimi tamamlad\u0131\u011f\u0131m bir burs kazand\u0131m.<\/p>\n

\u00a0NCNP'de Prof Ikuya Nonaka'n\u0131n g\u00f6zetiminde kas hastal\u0131klar\u0131n\u0131n te\u015fhisi ve y\u00f6netimi konusunda e\u011fitim ald\u0131m.<\/p>\n

Ayr\u0131ca, Newcastle \u00dcniversitesi'ndeki TREAT-NMD ofisinde NMD kay\u0131tlar\u0131 \u00fczerinde \u00e7al\u0131\u015fmak \u00fczere e\u011fitim ald\u0131m.<\/p>\n

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

B\u00f6lgede bu alanda uzmanla\u015fm\u0131\u015f kas merkezleri ve t\u0131p uzmanlar\u0131 eksikti, hen\u00fcz mevcut tedaviler olmasa bile her hastan\u0131n kesin bir te\u015fhis ve uygun y\u00f6netime sahip olma hakk\u0131 oldu\u011funa inan\u0131yorum. Kas distrofisine sahip olmak, hastalar\u0131n hi\u00e7bir y\u00f6netim veya bak\u0131m olmadan evlerinde kalmalar\u0131 gerekti\u011fi anlam\u0131na gelmez. Doktorlar\u0131n ailelere kas hastal\u0131\u011f\u0131 olan \u00e7ocuklar\u0131ndan vazge\u00e7melerini, onlar\u0131 herhangi bir uygun y\u00f6netim veya e\u011fitim olmadan b\u0131rakmalar\u0131n\u0131 ve ba\u015fka bir \u00e7ocuk sahibi olmay\u0131 d\u00fc\u015f\u00fcnmeye ba\u015flamalar\u0131n\u0131 s\u00f6ylediklerini \u00f6\u011frenmek \u00e7ok sinir bozucuydu! Hastalar\u0131n, te\u015fhis ve erken uygun y\u00f6netim eksikli\u011fi nedeniyle hastal\u0131\u011f\u0131n bir sonucu olarak kalp veya solunum problemlerinden muzdarip olduklar\u0131n\u0131 g\u00f6rmek, aileleri e\u011fitmek, fark\u0131ndal\u0131\u011f\u0131 art\u0131rmak ve hastalar i\u00e7in uygun bak\u0131m standartlar\u0131 sa\u011flamak i\u00e7in bana ilham verdi. Ayr\u0131ca, hastalar \u00fczerinde klinik deneylere\/do\u011fal ge\u00e7mi\u015f \u00e7al\u0131\u015fmalar\u0131na ba\u015flamak isteyen ila\u00e7 \u015firketlerinin, b\u00f6lgedeki uzmanla\u015fm\u0131\u015f t\u0131bbi bak\u0131m eksikli\u011fi nedeniyle M\u0131s\u0131rl\u0131 ve Arap hastalar\u0131 dahil etmekte isteksiz olduklar\u0131n\u0131 g\u00f6rd\u00fcm. T\u00fcm bunlar beni musk\u00fcler distrofi alan\u0131nda hasta hizmetleri ve klinik bak\u0131m konular\u0131nda \u00e7al\u0131\u015fmaya daha da kararl\u0131 hale getirdi.<\/p>\n

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

M\u0131s\u0131r, Arap ve Afrika b\u00f6lgesinden hastalara tan\u0131 koyan \u00f6zel bir kas hastal\u0131klar\u0131 merkezini y\u00f6netiyorum. Ayr\u0131ca, kas biyopsileri, genetik analizler yap\u0131yor ve destekleyici terapi, rehabilitasyon ve kalp ve solunum bak\u0131m\u0131 i\u00e7in alt\u0131 ayl\u0131k takipleri i\u00e7eren bir y\u00f6netim plan\u0131 sunuyorum.<\/p>\n

2012 y\u0131l\u0131nda M\u0131s\u0131r n\u00f6rom\u00fcsk\u00fcler kay\u0131t merkezinin koordinat\u00f6r\u00fc oldum. Ve son 10 y\u0131lda M\u0131s\u0131r'\u0131n uzak b\u00f6lgelerindeki hastalara ula\u015fmak i\u00e7in bir\u00e7ok yerel fark\u0131ndal\u0131k konvoyuna liderlik ettim.<\/p>\n

Ayr\u0131ca, 2019 y\u0131l\u0131nda kas hastal\u0131\u011f\u0131 olan hastalar\u0131 desteklemeyi, LGMD ile ilgili ara\u015ft\u0131rmalar\u0131 te\u015fvik etmeyi ve bir kas hastal\u0131\u011f\u0131 biyobankas\u0131 kurmay\u0131 ama\u00e7layan bir kas distrofisi STK vakf\u0131 kurdum. Umar\u0131m, yeterli fonumuz oldu\u011funda, gelecekte b\u00f6lgedeki t\u00fcm LGMD hastalar\u0131na destek sa\u011flayabilir<\/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

Son y\u0131llarda 1000'den fazla vakaya te\u015fhis koyman\u0131n yan\u0131 s\u0131ra hastalar\u0131 durumlar\u0131 hakk\u0131nda e\u011fitmek, hastal\u0131\u011fa bak\u0131\u015f a\u00e7\u0131lar\u0131n\u0131 de\u011fi\u015ftirmeye ve komplikasyonlar\u0131 y\u00f6netmeye ve olas\u0131 tedavileri d\u00f6rt g\u00f6zle beklemeye ba\u015flamalar\u0131na yard\u0131mc\u0131 oldu.<\/p>\n

LGMD hastalar\u0131n\u0131n uygun deste\u011fe ihtiyac\u0131 var. \u015eu anda t\u0131p fak\u00fcltesinden mezun olan ve bizimle \u00e7al\u0131\u015fmaya ba\u015flayan tutkulu bir LGMD hastam\u0131z var, b\u00f6lgemizde LGMD'li hastalara ne kadar \u00e7ok tan\u0131 koyarsak hastal\u0131\u011f\u0131n do\u011fas\u0131n\u0131 o kadar iyi anlar\u0131z ve bu alandaki ara\u015ft\u0131rmalar\u0131 te\u015fvik etmeye yard\u0131mc\u0131 oluruz. B\u00f6lgemizde akrabal\u0131k \u00e7ok yayg\u0131n, bu nedenle ayn\u0131 mutasyondan muzdarip, biraz farkl\u0131 fenotiplere sahip 30'dan fazla hastaya sahip aileler g\u00f6r\u00fcyoruz. Ve hala kesin tan\u0131s\u0131 olmayan bir\u00e7ok hasta var. Bence bu konuda daha fazla ara\u015ft\u0131rma yap\u0131lmas\u0131 gerekiyor.<\/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

Te\u015fhis, daha iyi hasta bak\u0131m\u0131 ve ara\u015ft\u0131rma i\u00e7in bir k\u00f6\u015fe ta\u015f\u0131d\u0131r. LGMD genel bir tan\u0131d\u0131r ve hastalar\u0131n ne t\u00fcr bir LGMD'ye sahip olduklar\u0131n\u0131 bilmemeleri art\u0131k kabul edilemez. Halihaz\u0131rda tedavisi bulunmayan hastal\u0131klar\u0131n hala tedavi ve takip edilmesi gerekmektedir. Daha fazla kaynak ve finansmanla, b\u00f6lgedeki t\u00fcm LGMD hastalar\u0131n\u0131 kapsayabilir, daha iyi bir ya\u015fam s\u00fcrmelerine yard\u0131mc\u0131 olabilir ve hastal\u0131k i\u00e7in ara\u015ft\u0131rmalar\u0131 te\u015fvik edebiliriz.<\/p>\n

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

Toplumumuzdaki t\u00fcm engellere ra\u011fmen e\u011fitimlerine devam edecek ve kariyerlerini s\u00fcrd\u00fcrecek kadar diren\u00e7li olan hastalar\u0131mdan s\u00fcrekli ilham al\u0131yorum. Ergenlik \u00e7a\u011f\u0131ndaki \u00e7ocuklar\u0131n\u0131 d\u00fczenli olarak kontrolleri i\u00e7in klini\u011fe getiren anneler. Hastalar\u0131m\u0131n te\u015fhis almalar\u0131na yard\u0131mc\u0131 oldu\u011fumda ve y\u0131llarca farkl\u0131 uzmanlar\u0131 dola\u015f\u0131p kesin bir te\u015fhis alamad\u0131ktan sonra nihayet durumlar\u0131n\u0131 anlad\u0131klar\u0131nda kendimi \u00e7ok mutlu hissediyorum. Her ne kadar 20 y\u0131l \u00f6nce bu alanda \u00e7al\u0131\u015fmaya ba\u015flad\u0131\u011f\u0131mda \u00fclkemdeki hastalar te\u015fhis veya tedavi i\u00e7in ula\u015fma konusunda \u00e7ok isteksiz olsalar da, \u015fimdi yeni genetik tedaviler onayland\u0131k\u00e7a bu durum de\u011fi\u015fmeye ba\u015fl\u0131yor.<\/p>\n

HAKKINIZDA PEK \u00c7OK KI\u0307\u015eI\u0307NI\u0307N BI\u0307LMEDI\u0307\u011eI\u0307 E\u015eSI\u0307Z BI\u0307R GER\u00c7EK NEDI\u0307R?<\/strong><\/p>\n

2017'de bana Kanser te\u015fhisi kondu ve hayatta kalmama en \u00e7ok yard\u0131mc\u0131 olan ve beni her ge\u00e7en g\u00fcn daha da zorlayan \u015feylerden biri, hastalar\u0131mdan ald\u0131\u011f\u0131m mesajlar ve dualar oldu; onlara yard\u0131m etmek i\u00e7in bir an \u00f6nce klini\u011fe d\u00f6nmemi istiyorlard\u0131.<\/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 do\u011fru te\u015fhisin \u00f6nemini anlamal\u0131 ve bunun i\u00e7in MR, Kas Biyopsileri ve genetik analiz gibi do\u011fru ara\u00e7lar\u0131 kullanmal\u0131d\u0131r. Bunun yan\u0131 s\u0131ra, belirli hastal\u0131klar i\u00e7in kesin tedaviler olmasa bile rehabilitasyon, psikolojik destek ve takip gibi y\u00f6netimin \u00f6nemini kabul etmelidirler. Hayat ya\u015famaya ve u\u011fruna sava\u015fmaya de\u011fer.<\/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\/tr\/clinic-staff\/2020\/09\/08\/rasha-el-sherif\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD CLINIC STAFF: Rasha El Sherif - 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