{"id":1722,"date":"2018-02-26T21:26:04","date_gmt":"2018-02-27T03:26:04","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1722"},"modified":"2018-02-26T21:26:04","modified_gmt":"2018-02-27T03:26:04","slug":"aleksandra","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2018\/02\/26\/aleksandra\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Aleksandra"},"content":{"rendered":"<p><strong>LGMD \"Spotlight R\u00f6portaj\u0131\" - Bir Annenin<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2018\/02\/LGMD2D-Aleksandra.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1720 alignright\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27300%27%20height%3D%27169%27%20viewBox%3D%270%200%20300%20169%27%3E%3Crect%20width%3D%27300%27%20height%3D%27169%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2018\/02\/LGMD2D-Aleksandra-300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a> Perspektif<\/strong><\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p><strong>Anne ad\u0131:\u00a0 <\/strong>Aleksandra<\/p>\n<p><strong>\u00dclke:<\/strong> \u00a0\u00a0Hollanda<\/p>\n<p><strong>O\u011flunun LGMD Alt Tipi:<\/strong>\u00a0 LGMD2D<!--more--><\/p>\n<p>&nbsp;<\/p>\n<p><strong>O\u011eLUNUZA KA\u00c7 YA\u015eINDA TE\u015eHIS KONULDU?<\/strong>:<\/p>\n<p>O\u011fluma 3. ya\u015f g\u00fcn\u00fcnden bir hafta \u00f6nce y\u00fcksek CK seviyelerine dayanarak te\u015fhis konuldu.  Ba\u015flang\u0131\u00e7ta bize Duchenne Musk\u00fcler Distrofi oldu\u011fu s\u00f6ylendi.  Ancak kas biyopsisi istedik ve daha sonra asl\u0131nda LGMD2D oldu\u011funu \u00f6\u011frendik.<\/p>\n<p><strong>ILK BELIRTILERI NEYDI?<\/strong>:<\/p>\n<p>O\u011flum do\u011fdu\u011fundan beri hipotonik ve bir\u00e7ok solunum yolu enfeksiyonu ge\u00e7irdi. Emeklemeye ba\u015flad\u0131\u011f\u0131nda arkada\u015f\u0131m ve \u00c7inli akupunktur uzman\u0131 bize emekleme \u015feklinin al\u0131\u015f\u0131lmad\u0131k oldu\u011funu s\u00f6yledi ve CK seviyelerini kontrol etmemizi tavsiye etti. 3 ya\u015f\u0131ndayken doktor onda kas distrofisi oldu\u011funu \u00f6\u011frendi. En b\u00fcy\u00fck k\u0131z karde\u015fi HLHS nedeniyle vefat etti\u011fi ve ben de en k\u00fc\u00e7\u00fc\u011f\u00fcm\u00fcze 8 ayl\u0131k hamile oldu\u011fum i\u00e7in y\u0131k\u0131lm\u0131\u015ft\u0131k. LGMD2D tipi oldu\u011funu \u00f6\u011frenmemiz neredeyse bir y\u0131l s\u00fcrd\u00fc ve \u00e7ocu\u011fumu kurtarmak i\u00e7in ne gerekiyorsa yapmaya haz\u0131rd\u0131m. Her zaman \u015f\u00f6yle derdim:  D\u00fcnyan\u0131n \u00f6b\u00fcr ucuna gitmem gerekse bile giderdim!<\/p>\n<p><strong>LGMD HASTASI OLAN BA\u015eKA AILE \u00dcYELERINIZ VAR MI?<\/strong><\/p>\n<p>Hay\u0131r, ailemizin her iki taraf\u0131nda da kimseye LGMD2D te\u015fhisi konmad\u0131, ancak en k\u00fc\u00e7\u00fck k\u0131z\u0131m\u0131z hen\u00fcz do\u011frulanm\u0131\u015f bir te\u015fhis almam\u0131\u015f olmas\u0131na ra\u011fmen benzer semptomlar g\u00f6steriyor.<\/p>\n<p><strong>EN B\u00dcY\u00dcK ZORLUK OLARAK NEYI G\u00d6R\u00dcYORSUNUZ<\/strong>:<\/p>\n<p>Ak\u015famdan ak\u015fama, zaman\u0131m\u0131 internette bilgi arayarak ge\u00e7irdim. \u00c7ocuklar uyur uyumaz umutsuzca o\u011flum i\u00e7in bir tedavi bulmaya \u00e7al\u0131\u015ft\u0131m.  Hollanda'da LGMD2D tan\u0131s\u0131 konmu\u015f sadece 11 \u00e7ocuk vard\u0131 ve Hollanda'da nadir hastal\u0131klar\u0131n \"ihmal edildi\u011fini\" biliyorduk.   Bir LGMD2D ebeveyn grubu kurduk ve art\u0131k Hollanda'daki LGMD2D'li ailelerin \u00e7o\u011funu tan\u0131yorum.  T\u00fcm ara\u015ft\u0131rma paralar\u0131 b\u00fcy\u00fck hasta gruplar\u0131na gidiyor.   Bu y\u00fczden doktorumuzla birlikte, tedaviye kadar ge\u00e7ecek s\u00fcre i\u00e7in y\u0131lda 4 kez plan yapt\u0131k:<\/p>\n<ul>\n<li>Zeki oldu\u011fu i\u00e7in s\u0131n\u0131rlamalar yerine olas\u0131l\u0131klar\u0131 d\u00fc\u015f\u00fcnerek evde ve okulda g\u00fcnl\u00fck refah\u0131na dikkat etmek;<\/li>\n<li>T\u00fcm uyarlamalara sahip bir ev in\u015fa ettik;<\/li>\n<li>Bize biraz daha zaman kazand\u0131rmas\u0131 i\u00e7in hastal\u0131\u011f\u0131 yava\u015flatmak amac\u0131yla ortomolek\u00fcler rejime ve prednizona ba\u015flad\u0131k.<\/li>\n<li>Ve son olarak o\u011flum, kabullenmesi ve d\u00f6n\u00fc\u015fmesi i\u00e7in ara\u00e7lar sa\u011flamak amac\u0131yla haftal\u0131k olarak \u00f6ritmik, m\u00fczik terapisi ve sanat dersi gibi terapiler ald\u0131.<\/li>\n<\/ul>\n<p>Bir ebeveyn olarak, bunun bir nedenden dolay\u0131 hayat\u0131m\u0131za girdi\u011fine ve bize yard\u0131m eden en \u00f6zverili doktorlara sahip oldu\u011fumuza ger\u00e7ekten inan\u0131yorum!  Bu bizim tedaviye giden yolculu\u011fumuz, 7\/24 hi\u00e7 bitmeyecek bir i\u015f ama vazge\u00e7meyece\u011fiz.<\/p>\n<p><strong>EN B\u00dcY\u00dcK BA\u015eARINIZ NEDIR<\/strong>:<\/p>\n<p>Bir ebeveyn olarak, bunun bir nedenden dolay\u0131 hayat\u0131m\u0131za girdi\u011fine ve bize yard\u0131m eden en \u00f6zverili doktorlara sahip oldu\u011fumuza ger\u00e7ekten inan\u0131yorum! Bu bizim var\u0131\u015f noktas\u0131 olan bir yolculu\u011fumuz. Prof. Mendell ile on y\u0131l \u00f6nce tan\u0131\u015ft\u0131k. Ekibi \u00e7ok titiz \u00e7al\u0131\u015ft\u0131\u011f\u0131 ve \u00e7ocuk merkezli oldu\u011fu i\u00e7in ger\u00e7ekten \u00e7ok etkilendik. O\u011flumun nas\u0131l oldu\u011funu ve hastal\u0131\u011f\u0131 hakk\u0131ndaki d\u00fc\u015f\u00fcncelerini \u00f6\u011frenmeye \u00e7ok hevesliydiler. Bir g\u00fcn bir denemeye kat\u0131labilece\u011fini umarken birka\u00e7 y\u0131l boyunca geri geldik ve bu arada en iyi t\u0131bbi ve \u00f6zel ellerdeydi.<\/p>\n<p><strong>LGMD SI\u0307ZI\u0307 VE AI\u0307LENI\u0307ZI\u0307 NASIL ETKI\u0307LEDI\u0307?<\/strong><\/p>\n<p>Sadece o\u011flum i\u00e7in de\u011fil t\u00fcm hastalar i\u00e7in ilerleyen kas y\u0131k\u0131m\u0131 s\u00fcrecini durdurmay\u0131 ger\u00e7ekten \u00e7ok istiyorduk. 2015-2017 y\u0131llar\u0131 aras\u0131nda bir denemeye kat\u0131ld\u0131k ve sonu\u00e7lar umut verici, her ge\u00e7en g\u00fcn tedaviye daha da yakla\u015f\u0131yoruz. Kat\u0131lmak b\u00fcy\u00fck bir onurdu ve LGMD2D'nin yak\u0131n gelecekte durdurulaca\u011f\u0131na ger\u00e7ekten inan\u0131yoruz. Umut var! Nationwide \u00c7ocuk Hastanesi'ndeki ekip kendini \u00e7ok adam\u0131\u015f. Laboratuvar\u0131 gezdik ve her \u015feyle nas\u0131l ilgilendiklerini g\u00f6rd\u00fck, hatta laboratuvar deprem g\u00fcvenli\u011fi i\u00e7in in\u015fa edilmi\u015f ve tedaviyi de\u011ferli k\u0131lmak i\u00e7in HEPA filtreleri ve pek \u00e7ok g\u00fcvenlik kural\u0131 kullan\u0131yorlar. Yak\u0131nda LGMD2D'yi tedavi etmenin yollar\u0131 bulunacak. Bu arada biz de her d\u00f6n\u00fcm noktas\u0131n\u0131 kutlamay\u0131 \u00f6\u011frendik. Ke\u015fke \u00e7ocu\u011fuma te\u015fhis konuldu\u011funda bunu bilseydim! Bu deneme bizi bir\u00e7ok y\u00f6nden de\u011fi\u015ftirdi ve bizi \u00e7ok minnettar ve al\u00e7akg\u00f6n\u00fcll\u00fc yapt\u0131. Ayr\u0131ca bize arkada\u015flar ve yeni bir aile, bir gelecek ve ya\u015fama g\u00fcc\u00fc verdi.<\/p>\n<p><strong>D\u00dcNYANIN LGMD HAKKINDA NE BI\u0307LMESI\u0307NI\u0307 I\u0307STI\u0307YORSUNUZ<\/strong>:<\/p>\n<p>D\u00fcnyan\u0131n bir tedavi umudu oldu\u011funu bilmesini istiyorum. Ne yaz\u0131k ki hala yeni ara\u015ft\u0131rmalar\u0131 s\u00f6ylemeyen ya da bilmeyen doktorlar var.  Nadir hastal\u0131klar hastaya en g\u00fcncel bilgilerin verilmesini gerektirir.  D\u00fcnya \u00e7ap\u0131nda birlikte \u00e7al\u0131\u015fmam\u0131z gerekiyor. O\u011fluma her zaman Nationwide \u00c7ocuk Hastanesi'ndeki pek \u00e7ok doktorun bir tedavi \u00fczerinde \u00e7al\u0131\u015ft\u0131\u011f\u0131n\u0131 ve bir gelece\u011fi oldu\u011funu s\u00f6yledim.  Yeniden dozlama i\u00e7in antikorlar\u0131 ve t\u00fcm hastalar i\u00e7in tedaviyi sa\u011flayacak paray\u0131 bulmak b\u00fcy\u00fck bir zorluk. Zaman t\u00fcm hastalar i\u00e7in i\u015fliyor! Onlar bizim kahramanlar\u0131m\u0131z. Benim o\u011flum en iyi sava\u015f\u00e7\u0131d\u0131r.  Umar\u0131m insanlar n\u00f6rom\u00fcsk\u00fcler hastal\u0131klar\u0131 tedavi etmenin bu yeni yoluna yat\u0131r\u0131m yaparlar, tedaviye her zamankinden daha yak\u0131n\u0131z.<\/p>\n<p><strong>O\u011eLUNUZUN LGMD HASTALI\u011eI YARIN \"TEDAVI\u0307\" EDI\u0307LEBI\u0307LECEK OLSA, SI\u0307ZI\u0307N VE O\u011eLUNUZUN YAPMAK I\u0307STEDI\u0307\u011eI\u0307 I\u0307LK \u015eEY NE OLURDU?<\/strong>:<\/p>\n<p>Bir anne olarak, doktorlara d\u00fcnya \u00e7ap\u0131nda nadir g\u00f6r\u00fclen hastal\u0131klar\u0131 tedavi etmek i\u00e7in birlikte \u00e7al\u0131\u015fmalar\u0131 gerekti\u011fini ve gen tedavisinin t\u0131bbi tedavinin yeni yolu olaca\u011f\u0131n\u0131 s\u00f6yleyece\u011fim.<br \/>\nO\u011flumun ko\u015faca\u011f\u0131n\u0131 ve eskrim m\u00fcsabakalar\u0131na kat\u0131laca\u011f\u0131n\u0131 d\u00fc\u015f\u00fcn\u00fcyorum. Ge\u00e7enlerde bana r\u00fcyalar\u0131nda bazen ko\u015ftu\u011funu s\u00f6yledi.<\/p>\n<p>&nbsp;<\/p>\n<p>* * * Daha fazla \"LGMD Spotlight R\u00f6portaj\u0131\" okumak veya yakla\u015fan bir r\u00f6portajda yer almak i\u00e7in g\u00f6n\u00fcll\u00fc olmak i\u00e7in l\u00fctfen https:\/\/www.lgmd-info.org\/spotlight-interviews adresindeki web sitemizi ziyaret edin.<\/p>\n<p>* * * LGMD konusunda fark\u0131ndal\u0131k yaratmaya yard\u0131mc\u0131 olmak i\u00e7in l\u00fctfen bu g\u00f6nderiyi BE\u011eEN\u0130N, YORUM YAPIN ve PAYLA\u015eIN!<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSpotlight Interview\u201d \u2013 A Mother&#8217;s Perspective \u00a0 Mother\u2019s Name:\u00a0 [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1720,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,28],"tags":[90],"class_list":["post-1722","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2d","tag-lgmd2d-the-netherlands"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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