{"id":1836,"date":"2024-08-08T19:36:06","date_gmt":"2024-08-08T16:36:06","guid":{"rendered":"https:\/\/kirsehirsondakika.com.tr\/?p=1836"},"modified":"2024-08-08T19:36:06","modified_gmt":"2024-08-08T16:36:06","slug":"turkiye-sma-vakfi-agustos-sma-farkindalik-ayinda-tedaviye-erisim-cagrisi-yapiyor","status":"publish","type":"post","link":"https:\/\/kirsehirsondakika.com.tr\/index.php\/2024\/08\/08\/turkiye-sma-vakfi-agustos-sma-farkindalik-ayinda-tedaviye-erisim-cagrisi-yapiyor\/","title":{"rendered":"T\u00fcrkiye SMA Vakf\u0131, A\u011fustos SMA Fark\u0131ndal\u0131k Ay\u0131nda “Tedaviye Eri\u015fim” \u00c7a\u011fr\u0131s\u0131 Yap\u0131yor"},"content":{"rendered":"

T\u00fcm d\u00fcnyada A\u011fustos ay\u0131, SMA Fark\u0131ndal\u0131k Ay\u0131 olarak kabul g\u00f6r\u00fcyor ve hastal\u0131k hakk\u0131nda bilin\u00e7lendirme kampanyalar\u0131 y\u00fcr\u00fct\u00fcl\u00fcyor. Her hastaya e\u015fit ve adil tedavi prensibiyle faaliyet g\u00f6steren T\u00fcrkiye SMA Vakf\u0131;\u00a0A\u011fustos ay\u0131nda farkl\u0131 \u00e7al\u0131\u015fmalarla SMA ile ilgili hakikat bilinen yanl\u0131\u015flara, hastal\u0131\u011f\u0131n \u00f6nlenebilmesi i\u00e7in \u00e7ok de\u011ferli olan tarama testlerine ve tedaviye eri\u015fimin de\u011ferine dikkat \u00e7ekecek. Ayr\u0131yeten SMA hastalar\u0131n\u0131 ve ailelerini uzmanlarla bir ortaya getirdi\u011fi Ulusal SMA Kamp\u0131\u2019n\u0131n 3.s\u00fcn\u00fc 22-25 A\u011fustos tarihleri ortas\u0131nda ger\u00e7ekle\u015ftirecek.<\/strong><\/em><\/p>\n

SMA (Spinal M\u00fcsk\u00fcler Atrofi) en yayg\u0131n tarifiyle, ilerleyici ve kal\u0131tsal bir kas hastal\u0131\u011f\u0131. Yayg\u0131n olarak bilinen ve a\u011f\u0131r seyreden tip 1 dahil olmak \u00fczere bebeklikten yeti\u015fkinli\u011fe 4 farkl\u0131 tipi bulunuyor. \u00dclkemizde toplamda 3 bin kadar SMA hastas\u0131 oldu\u011fu iddia ediliyor. Aral\u0131k 2021\u2019de ba\u015flayan tarama testleri sayesinde 81 vilayette evlilik \u00f6ncesinde fiyats\u0131z test imkan\u0131 sunuldu\u00a0Sa\u011fl\u0131k Bakanl\u0131\u011f\u0131 verilerine g\u00f6re Yenido\u011fan Taramas\u0131 kapsam\u0131nda 2022 y\u0131l\u0131ndan bug\u00fcne kadar 1 milyon 553 bin 189 bebek tarand\u0131, 235 bebe\u011fe SMA tan\u0131s\u0131 kondu. Toplumda daha \u00e7ok ki\u015fisel ila\u00e7 kampanyalar\u0131yla g\u00fcndemde olan hastal\u0131k, bize uzak g\u00f6r\u00fcnse de \u00fclkemizde her 50 bireyden birinin ta\u015f\u0131y\u0131c\u0131 oldu\u011fu ger\u00e7e\u011fi, SMA hakk\u0131ndaki fark\u0131ndal\u0131\u011f\u0131n artmas\u0131n\u0131n k\u0131ymetini ortaya koyuyor.\u00a0<\/p>\n

T\u00fcm d\u00fcnyada A\u011fustos ay\u0131 SMA Fark\u0131ndal\u0131k Ay\u0131 olarak bedellendiriliyor.\u00a0T\u00fcrkiye SMA Vakf\u0131 da, A\u011fustos SMA Fark\u0131ndal\u0131k Ay\u0131nda \u201cTedaviye Eri\u015fim\u201d ba\u015fta olmak \u00fczere, hastal\u0131\u011f\u0131n \u00f6nlenmesi i\u00e7in yap\u0131labilecekler ve hastalar\u0131n hayata daha g\u00fc\u00e7l\u00fc tutunmas\u0131 i\u00e7in gerekenlere dikkat \u00e7ekece\u011fi bir bilin\u00e7lendirme kampanyas\u0131 y\u00fcr\u00fctecek. Ayr\u0131yeten SMA hastalar\u0131n\u0131 ve ailelerini uzmanlarla bir ortaya getirdi\u011fi Ulusal SMA Kamp\u0131n\u0131n 3.s\u00fcn\u00fc 22-25 A\u011fustos tarihleri ortas\u0131nda ger\u00e7ekle\u015ftirecek.<\/p>\n

Daha Sa\u011fl\u0131kl\u0131 Bir Toplum \u0130\u00e7in Tedaviye E\u015fit ve Fiyats\u0131z Eri\u015fim\u00a0<\/strong><\/p>\n

Nadir g\u00f6r\u00fclen hastal\u0131klar k\u00fcmesine giren SMA\u2019da erken te\u015fhis ve tedavinin \u00e7ok de\u011ferli oldu\u011funun alt\u0131n\u0131 \u00e7izen T\u00fcrkiye SMA Vakf\u0131 Lider Vekili Ece Soyer Demir, mevzuyla ilgili \u015funlar\u0131 s\u00f6yledi: \u201cT\u00fcrkiye SMA Vakf\u0131 olarak \u00f6nlenebilir bir hastal\u0131k olan SMA\u2019n\u0131n bilinmeyenleri i\u00e7in fark\u0131ndal\u0131k \u00e7al\u0131\u015fmalar\u0131 \u00f6ncelikli \u00e7al\u0131\u015fma alanlar\u0131m\u0131zdan.\u00a0A\u011fustos t\u00fcm d\u00fcnyada SMA Fark\u0131ndal\u0131k Ay\u0131. Bu y\u0131l fark\u0131ndal\u0131k ay\u0131nda SMA\u2019da tedaviye eri\u015fim konusuna odakland\u0131k. \u00c7\u00fcnk\u00fc\u00a0nadir bir hastal\u0131k olan SMA\u2019n\u0131n\u00a0tedavisinde, erken te\u015fhis kadar tedaviye erken ba\u015flanmas\u0131 ve tertipli kullan\u0131lmas\u0131 tedavinin muvaffakiyetinde kritik ehemmiyet ta\u015f\u0131yor.\u00a0Tedavi sistemlerinin birbirlerine kar\u015f\u0131 \u00fcst\u00fcnl\u00fcklerini g\u00f6steren bir ara\u015ft\u0131rma bulunmamakla birlikte, \u00fc\u00e7 tedavinin de ortak \u00f6zelli\u011fi ne kadar erken periyotta al\u0131n\u0131rsa o kadar ba\u015far\u0131l\u0131 sonu\u00e7 verdi\u011fi.\u00a0Hastal\u0131\u011f\u0131n\u0131n tedavisinde EMA (Avrupa \u0130la\u00e7 Ajans\u0131) ve FDA (Amerikan \u0130la\u00e7 ve Besin Dairesi) taraf\u0131ndan onaylanan 3 farkl\u0131 tedavi tekni\u011fi mevcut. \u015eu anda \u00fclkemizde bunlardan yaln\u0131zca bir tanesi SGK geri \u00f6deme kapsam\u0131nda, kriterleri sa\u011flayan hastalara fiyats\u0131z olarak eri\u015ftiriliyor. Lakin bu tedavi usul\u00fcnden s\u0131hhat problemleri nedeniyle yararlanamayan hastalar ba\u015fta olmak \u00fczere; alternatif tedavilerin hastalar\u0131n kullan\u0131m\u0131na sunulmas\u0131n\u0131 bekliyoruz. Bu nedenle \u2018Tedaviye Eri\u015fim\u2019 davetimizi fark\u0131ndal\u0131k ay\u0131 vesilesiyle tekrar g\u00fcndeme getiriyoruz.<\/em>\u00a0Ayr\u0131ca kamuoyunda SMA fark\u0131ndal\u0131\u011f\u0131 artt\u0131rmak i\u00e7in toplumsal medya i\u00e7erikleri ile ay boyunca bilin\u00e7lendirme kampanyam\u0131z devam edecek.<\/em>\u00a0<\/p>\n

Aileler SMA Kamp\u0131nda Uzmanlarla Bulu\u015facak<\/strong><\/p>\n

T\u00fcrkiye SMA Vakf\u0131 SMA ayr\u0131yeten; tedaviye eri\u015fime ve ta\u015f\u0131y\u0131c\u0131l\u0131k tarama testlerinin de\u011ferinde vurgu yapaca\u011f\u0131 fark\u0131ndal\u0131k ay\u0131nda, Ulusal SMA Kamp\u0131\u2019n\u0131n da \u00fc\u00e7\u00fcnc\u00fcs\u00fcn\u00fc d\u00fczenliyor. SMA\u2019da hasta yak\u0131nlar\u0131n\u0131n te\u015fhis ald\u0131ktan sonra ya\u015fad\u0131\u011f\u0131 zorluklar yaln\u0131zca tedavi ile hudutlu olmad\u0131\u011f\u0131n\u0131n alt\u0131n\u0131 \u00e7izen Ece Soyer Demir;\u00a0\u201cHasta aileleri e\u011fitim, toplumsal haklar, hukuksal s\u00fcre\u00e7ler, hasta bak\u0131m\u0131 \u00fczere hususlarda da bilinmezliklerle u\u011fra\u015f ediyorlar. Ulusal SMA Kamp\u0131; hasta ailelerini uzmanlarla bir ortaya getirerek bu alanlarda g\u00fc\u00e7lendirmek gayesiyle d\u00fczenledi\u011fimiz bir tertip. Kamp\u0131n bir \u00f6b\u00fcr k\u0131ymetli yarar\u0131 ise T\u00fcrkiye\u2019nin farkl\u0131 vilayetlerinden gelen hasta ve ailelerin toplumsal bir ortamda bir ortaya gelerek tecr\u00fcbelerini payla\u015fmalar\u0131, yeni dostluklar kurmalar\u0131. Bu y\u0131l tekrar Fark\u0131ndal\u0131k Ay\u0131 kapsam\u0131nda, Prof. Dr. K\u00fcr\u015fat Bora \u00c7arman\u2019\u0131n dan\u0131\u015fmanl\u0131\u011f\u0131nda haz\u0131rlanan kamp\u0131m\u0131zda aileler ve gen\u00e7ler e\u011fitim takviyesiyle g\u00fc\u00e7lenirken, \u00e7ocuklar\u0131 da farkl\u0131 etkinliklerle birlikte keyifli vakit ge\u00e7irecekler.\u201d dedi.\u00a0<\/em><\/p>\n

Kaynak: (BYZHA) Beyaz Haber Ajans\u0131<\/p>\n","protected":false},"excerpt":{"rendered":"

T\u00fcm d\u00fcnyada A\u011fustos ay\u0131, SMA Fark\u0131ndal\u0131k Ay\u0131 olarak kabul g\u00f6r\u00fcyor ve hastal\u0131k hakk\u0131nda bilin\u00e7lendirme kampanyalar\u0131 y\u00fcr\u00fct\u00fcl\u00fcyor.<\/p>\n","protected":false},"author":1,"featured_media":1837,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[4],"tags":[950,717,343,949,196],"class_list":["post-1836","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-gundem","tag-farkindalik-ayi","tag-hasta","tag-onem","tag-sma","tag-tedavi"],"_links":{"self":[{"href":"https:\/\/kirsehirsondakika.com.tr\/index.php\/wp-json\/wp\/v2\/posts\/1836"}],"collection":[{"href":"https:\/\/kirsehirsondakika.com.tr\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/kirsehirsondakika.com.tr\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/kirsehirsondakika.com.tr\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/kirsehirsondakika.com.tr\/index.php\/wp-json\/wp\/v2\/comments?post=1836"}],"version-history":[{"count":1,"href":"https:\/\/kirsehirsondakika.com.tr\/index.php\/wp-json\/wp\/v2\/posts\/1836\/revisions"}],"predecessor-version":[{"id":1838,"href":"https:\/\/kirsehirsondakika.com.tr\/index.php\/wp-json\/wp\/v2\/posts\/1836\/revisions\/1838"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/kirsehirsondakika.com.tr\/index.php\/wp-json\/wp\/v2\/media\/1837"}],"wp:attachment":[{"href":"https:\/\/kirsehirsondakika.com.tr\/index.php\/wp-json\/wp\/v2\/media?parent=1836"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/kirsehirsondakika.com.tr\/index.php\/wp-json\/wp\/v2\/categories?post=1836"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/kirsehirsondakika.com.tr\/index.php\/wp-json\/wp\/v2\/tags?post=1836"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}