{"id":5046,"date":"2024-08-30T11:48:06","date_gmt":"2024-08-30T08:48:06","guid":{"rendered":"https:\/\/yalovasondakika.com.tr\/?p=5046"},"modified":"2024-08-30T11:48:06","modified_gmt":"2024-08-30T08:48:06","slug":"sma-hastalari-ve-aileleri-ulusal-sma-kampinda-uzmanlarla-bir-araya-geldi","status":"publish","type":"post","link":"https:\/\/yalovasondakika.com.tr\/index.php\/2024\/08\/30\/sma-hastalari-ve-aileleri-ulusal-sma-kampinda-uzmanlarla-bir-araya-geldi\/","title":{"rendered":"SMA Hastalar\u0131 ve Aileleri Ulusal SMA Kamp\u0131&#8217;nda Uzmanlarla Bir Araya Geldi"},"content":{"rendered":"<p><em><strong>Aileler kamp boyunca fizik tedavi, enfeksiyon hastal\u0131klar\u0131, hasta haklar\u0131 \u00fczere mevzularda e\u011fitim al\u0131rken; SMA hastas\u0131 gen\u00e7 ve \u00e7ocuklar i\u00e7in de \u00e7al\u0131\u015ftay ve at\u00f6lyeler d\u00fczenlendi. Kampa bu y\u0131l milletleraras\u0131 kurulu\u015f SMA Europe da iki temsilciyle i\u015ftirak sa\u011flad\u0131.<\/strong><\/em><\/p>\n<p>\u00a0<\/p>\n<p>Genetik ge\u00e7i\u015fli ve ilerleyici bir ender hastal\u0131k olan SMA (Spinal Musk\u00fcler Atrofi) aileler i\u00e7in te\u015fhis al\u0131nd\u0131\u011f\u0131 andan itibaren kuvvetli bir s\u00fcrecin de ba\u015flang\u0131c\u0131 demek. M\u00fcnasebetiyle SMA hastas\u0131 bireylerin bak\u0131m\u0131, e\u011fitim hayat\u0131, toplumsal, t\u00fcrel haklar \u00fczere mevzularda ailelerin bilin\u00e7lenmesi, hastan\u0131n \u00f6m\u00fcr kalitesini direkt etkiliyor. Hasta yak\u0131nlar\u0131 ve \u00f6b\u00fcr bak\u0131m verenlerin bu alanlarda daima desteklenmesi gereksiniminden yola \u00e7\u0131kan\u00a0<strong>T\u00fcrkiye SMA Vakf\u0131<\/strong>\u00a0bu emelle ba\u015flatt\u0131\u011f\u0131 Ulusal SMA Kamp\u0131n\u0131n \u00fc\u00e7\u00fcnc\u00fcs\u00fcn\u00fc d\u00fczenledi. Ulusal SMA Kamp\u0131nda bu y\u0131l \u00e7ocuk, gen\u00e7 ve yeti\u015fkinler i\u00e7in \u00fc\u00e7 ba\u015fka kategoride e\u011fitim ve aktiflik program\u0131 haz\u0131rland\u0131. Kampa bu y\u0131l g\u00f6zlemci olarak SMA Europe\u2019dan Theodorus Soultanos ve Christian Mori de kat\u0131larak kendi \u00fclkelerindeki SMA s\u00fcre\u00e7leri ve tecr\u00fcbelerini aktard\u0131lar. \u00a0\u00a0<\/p>\n<p>\u00a0<\/p>\n<p><strong>E\u011fitimler Bahsin Uzmanlar\u0131 Taraf\u0131ndan Verildi<\/strong><\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p>Prof. Dr. K\u00fcr\u015fat Bora \u00c7arman\u2019\u0131n dan\u0131\u015fmanl\u0131\u011f\u0131nda haz\u0131rlanan kamp, alan\u0131nda \u00f6nde gelen uzmanlar\u0131n i\u015ftirakiyle 22- 25 A\u011fustos tarihleri ortas\u0131nda Eski\u015fehir\u2019de ger\u00e7ekle\u015ftirildi. Aileler\u00a0kamp boyunca\u00a0Prof. Dr. K\u00fcr\u015fat Bora \u00c7arman, Prof. Dr. \u00d6mer K\u0131l\u0131\u00e7, Prof. Dr. Kubilay Beng, Do\u00e7. Dr. Ahmet Cevdet Ceylan, Dr. \u00d6\u011fretim G\u00f6revlisi Azize Reda Tun\u00e7, Uzman Dt. Canan \u00d6zdemir, Av. Dr. Ahmet Ha\u015fim Alag\u00fcney ile\u00a0ortopedi, n\u00f6roloji, genetik, fizik tedavi, enfeksiyon, a\u011f\u0131z-di\u015f s\u0131hhati ve toplumsal haklar hakk\u0131nda d\u00fczenlenen oturumlarda bir ortaya geldiler.\u00a0SMA Hastal\u0131\u011f\u0131na \u00c7ok \u0130stikametli Bak\u0131\u015f, SMA Hastal\u0131\u011f\u0131nda Fizik Tedavi Uygulamalar\u0131, SMA Hastalar\u0131nda A\u011f\u0131z ve Di\u015f S\u0131hhati, Toplumsal Haklar\u0131m\u0131z, Enfeksiyon\u00a0Hastal\u0131klar\u0131, SMA Geneti\u011fi ve PGT, SMA Hastal\u0131\u011f\u0131nda\u00a0Ortopedik Yakla\u015f\u0131m\u00a0ba\u015fl\u0131klar\u0131yla d\u00fczenlenen oturumlara 53 SMA hastas\u0131 ve hasta yak\u0131n\u0131 i\u015ftirak sa\u011flad\u0131.<\/p>\n<p><strong>Aile ve Gen\u00e7ler \u0130\u00e7in \u00d6zel \u00c7al\u0131\u015ftaylar D\u00fczenledi\u00a0<\/strong><\/p>\n<p>Aileler e\u011fitimlerin yan\u0131 s\u0131ra; toplumsal, s\u0131hhat, e\u011fitim alanlar\u0131nda ya\u015fad\u0131klar\u0131 s\u0131k\u0131nt\u0131lar\u0131 ve tahlil tekliflerini \u2018SMA ile Ya\u015famak\u2019 bahisli aile \u00e7al\u0131\u015ftay\u0131nda lisana getirdiler. Ayr\u0131yeten bu y\u0131l birinci sefer gen\u00e7 SMA hastalar\u0131 i\u00e7in de \u2018Gen\u00e7lik \u00c7al\u0131\u015ftay\u0131\u2019 d\u00fczenlendi. \u00c7al\u0131\u015ftayda SMA hastas\u0131 gen\u00e7ler; toplumsal haklardan e\u011fitim hayat\u0131na, ferd\u00ee geli\u015fimden gelecek maksatlar\u0131na kadar bir\u00e7ok mevzuda hem bilgi ald\u0131 hem de kendi beklenti ve projelerini aktard\u0131.\u00a0Kampta ebeveynler e\u011fitimlere kat\u0131l\u0131rken; \u00e7ocuklar i\u00e7in de e\u011flenceli ve \u00f6\u011fretici etkinliklerden olu\u015fan at\u00f6lyeler d\u00fczenlendi. Ayr\u0131yeten Eski\u015fehir\u2019in simge yerlerinden olan Sazova Bilim, Sanat ve K\u00fct\u00fcr Park\u0131na bir seyahat d\u00fczenlendi.<\/p>\n<p>\u00a0<\/p>\n<p>Bu y\u0131l birinci kere kamp kapsam\u0131nda; e\u011fitim hayat\u0131 devam eden gen\u00e7 SMA hastalar\u0131 i\u00e7in de \u00f6zel e\u011fitim ve programlar ger\u00e7ekle\u015ftirildi. D\u00fczenlenen Gen\u00e7lik \u00c7al\u0131\u015ftay\u0131\u2019nda SMA ile u\u011fra\u015fta sivil toplumun rol\u00fc, gen\u00e7li\u011fin SMA u\u011fra\u015f\u0131ndaki k\u0131ymeti, SMA hastalar\u0131n\u0131n kar\u015f\u0131la\u015ft\u0131\u011f\u0131 toplumsal s\u0131k\u0131nt\u0131lar, \u00f6z savunuculuk ve ba\u011f\u0131ms\u0131z hayat \u00fczere kritik hususlar ele al\u0131nd\u0131. Gen\u00e7ler; SMA ile ya\u015faman\u0131n getirdi\u011fi zorluklar\u0131 ve bu zorluklara kar\u015f\u0131 geli\u015ftirilmesi gereken stratejileri tart\u0131\u015fma ve g\u00f6r\u00fc\u015flerini aktarma f\u0131rsat\u0131 buldular.\u00a0<\/p>\n<p>\u201c<em>\u00d6zellikle gen\u00e7lerin bu s\u00fcre\u00e7te etkin rol almas\u0131, toplumsal fark\u0131ndal\u0131\u011f\u0131n artmas\u0131na ve SMA ile u\u011fra\u015f\u0131n g\u00fc\u00e7lenmesine katk\u0131 sa\u011fl\u0131yor. Bu nedenle, gelecekte de emsal programlarla SMA ile ya\u015fayan gen\u00e7 toplulu\u011funu desteklemeye devam edece\u011fiz.\u201d<\/em>\u00a0diyen\u00a0<strong>T\u00fcrkiye SMA Vakf\u0131<\/strong>\u00a0Y\u00f6netim Kurulu Lider Vekili Ece Soyer Demir bahisle ilgili \u015funlar\u0131 s\u00f6yledi: \u201c<em>SMA a\u011f\u0131r bir hastal\u0131k ve hasta yak\u0131nlar\u0131n\u0131n te\u015fhis ald\u0131ktan sonra ya\u015fad\u0131\u011f\u0131 zorluklar yaln\u0131zca tedavi ile hudutlu de\u011fil. E\u011fitim, toplumsal haklar, hasta bak\u0131m\u0131 \u00fczere hususlarda da bir\u00e7ok \u015feyle t\u0131pk\u0131 anda \u00e7aba ediyorlar. Bu y\u0131l \u00fc\u00e7\u00fcnc\u00fcs\u00fcn\u00fc d\u00fczenledi\u011fimiz Ulusal SMA Kamp\u0131; hastalar ve ailelerini uzmanlarla bir ortaya getirerek, e\u011fitimlerle daha \u015fuurlu bir bak\u0131m s\u00fcreci y\u00fcr\u00fctmelerine katk\u0131 sa\u011flamay\u0131 ama\u00e7l\u0131yor. Kamp\u0131n bir \u00f6b\u00fcr k\u0131ymetli yarar\u0131 ise T\u00fcrkiye\u2019nin farkl\u0131 vilayetlerinden gelen hasta ve ailelerin bir ortaya gelerek tecr\u00fcbelerini payla\u015fmalar\u0131 ve dayan\u0131\u015fma a\u011f\u0131n\u0131 g\u00fc\u00e7lendirmeleri. Vak\u0131f olarak; her hastan\u0131n tedaviye e\u015fit ve adil eri\u015fimi i\u00e7in faaliyetlerimizi s\u00fcrd\u00fcr\u00fcrken, toplumda SMA fark\u0131ndal\u0131\u011f\u0131n\u0131n artmas\u0131 ve Ulusal SMA Kamp\u0131 \u00fczere dayan\u0131\u015fmam\u0131z\u0131 g\u00fc\u00e7lendirdi\u011fimiz farkl\u0131 etkinliklerimize devam edece\u011fiz.\u201d\u00a0<\/em><\/p>\n<p>Kaynak: (BYZHA) Beyaz Haber Ajans\u0131<\/p>\n","protected":false},"excerpt":{"rendered":"<p>T\u00fcrkiye SMA Vakf\u0131\u2019n\u0131n SMA hastalar\u0131 ve ailelerini, kapsaml\u0131 bir programla uzmanlarla bir ortaya getirdi\u011fi 3. Ulusal SMA Kamp\u0131 Eski\u015fehir\u2019de ger\u00e7ekle\u015ftirildi. T\u00fcrkiye\u2019de SMA konusunda bu alanda d\u00fczenlenen birinci tertip olan Ulusal SMA Kamp\u0131na T\u00fcrkiye\u2019nin farkl\u0131 vilayetlerinden 53 hasta ve hasta yak\u0131n\u0131 kat\u0131ld\u0131.<\/p>\n","protected":false},"author":1,"featured_media":5047,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[4],"tags":[172,369,678,382,915],"class_list":["post-5046","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-gundem","tag-egitim","tag-genc","tag-hasta","tag-kamp","tag-sma"],"_links":{"self":[{"href":"https:\/\/yalovasondakika.com.tr\/index.php\/wp-json\/wp\/v2\/posts\/5046"}],"collection":[{"href":"https:\/\/yalovasondakika.com.tr\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/yalovasondakika.com.tr\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/yalovasondakika.com.tr\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/yalovasondakika.com.tr\/index.php\/wp-json\/wp\/v2\/comments?post=5046"}],"version-history":[{"count":1,"href":"https:\/\/yalovasondakika.com.tr\/index.php\/wp-json\/wp\/v2\/posts\/5046\/revisions"}],"predecessor-version":[{"id":5048,"href":"https:\/\/yalovasondakika.com.tr\/index.php\/wp-json\/wp\/v2\/posts\/5046\/revisions\/5048"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/yalovasondakika.com.tr\/index.php\/wp-json\/wp\/v2\/media\/5047"}],"wp:attachment":[{"href":"https:\/\/yalovasondakika.com.tr\/index.php\/wp-json\/wp\/v2\/media?parent=5046"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/yalovasondakika.com.tr\/index.php\/wp-json\/wp\/v2\/categories?post=5046"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/yalovasondakika.com.tr\/index.php\/wp-json\/wp\/v2\/tags?post=5046"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}