{"id":10293,"date":"2022-07-19T11:51:04","date_gmt":"2022-07-19T11:51:04","guid":{"rendered":"https:\/\/haberulus.net\/?p=10293"},"modified":"2022-07-19T11:51:04","modified_gmt":"2022-07-19T11:51:04","slug":"7-yildir-esine-cocuk-gibi-bakiyor","status":"publish","type":"post","link":"https:\/\/haberulus.net\/?p=10293","title":{"rendered":"7 y\u0131ld\u0131r e\u015fine \u00e7ocuk gibi bak\u0131yor"},"content":{"rendered":"

\u0130zmir’de fabrika i\u015f\u00e7isi C\u00fcneyt Elemenler 7 y\u0131l \u00f6nce 20 bin ki\u015fide bir g\u00f6r\u00fclen Huntington hastal\u0131\u011f\u0131 te\u015fhisi koyulan \u00d6zlem Elemenler’e \u00e7ocuk gibi bak\u0131yor.\u00a0<\/b><\/p>\n

\u0130zmir\u2019de ya\u015fayan \u00d6zlem Elemenler\u2019e, 7 y\u0131l \u00f6nce genellikle 30 ila 50 ya\u015flar\u0131 aras\u0131nda motor, bili\u015fsel ve psikiyatrik bozukluklar\u0131n ortaya \u00e7\u0131kmas\u0131yla ba\u015flayan \u2018Huntington\u2019 te\u015fhisi koyuldu.<\/p>\n

Fabrikada i\u015f\u00e7i olarak \u00e7al\u0131\u015fan e\u015fi C\u00fcneyt Elemenler, hastal\u0131k ile birlikte e\u015finin g\u00fcnl\u00fck ya\u015fam\u0131n\u0131n tamamen de\u011fi\u015fti\u011fini s\u00f6yledi. \u0130stemsiz, ani hareketler, anormal duru\u015f, kas sertli\u011fi, dil ve alg\u0131 bozukluklar\u0131 nedeniyle e\u015finin tan\u0131namaz hale geldi\u011fini vurgulayan C\u00fcneyt Elemenler, 20 y\u0131ld\u0131r ayn\u0131 yast\u0131\u011fa ba\u015f koydu\u011fu \u00d6zlem Elemeler\u2019e \u015fimdi \u00e7ocuk gibi bakt\u0131\u011f\u0131n\u0131 anlatt\u0131.<\/p>\n

\"\"<\/p>\n

\u2018DURUMU G\u00dcNDEN G\u00dcNE DE\u011e\u0130\u015e\u0130YOR\u2019<\/strong><\/p>\n

Elemenler, \u201cE\u015fimin ilk \u015fikayetleri bula\u015f\u0131k y\u0131karken bardak ve tabaklar\u0131 elinden d\u00fc\u015f\u00fcr\u00fcp, k\u0131rmas\u0131 ile ba\u015flad\u0131. Bozyaka E\u011fitim Ara\u015ft\u0131rma Hastanesi\u2019nde 1 hafta yatt\u0131. N\u00f6roloji ve psikiyatri b\u00f6l\u00fcmlerinde yap\u0131lan tetkiklerle birlikte babas\u0131n\u0131n \u00f6zge\u00e7mi\u015finden yola \u00e7\u0131k\u0131larak Huntingon hastal\u0131\u011f\u0131 te\u015fhisi konuldu.\u00a0Babas\u0131 da ayn\u0131 hastal\u0131ktan ya\u015fam\u0131n\u0131 yitirmi\u015f. Evlendi\u011fimde e\u015fimin b\u00f6yle bir risk ta\u015f\u0131d\u0131\u011f\u0131n\u0131 bilmiyordum. 31 ya\u015f\u0131na kadar her \u015feyi normal olan e\u015fimin durumu g\u00fcnden g\u00fcne de\u011fi\u015fiyor\u201d dedi.<\/p>\n

Sosyal medyada \u2018T\u00fcrkiye\u2019de Huntington Koresi Hastalar\u0131\u2019 ad\u0131yla ki\u015fisel bir sayfa a\u00e7an C\u00fcneyt Elemenler, \u00e7ok say\u0131da hasta ile ileti\u015fim halinde olduklar\u0131n\u0131 kaydetti.<\/p>\n

\"\"<\/p>\n

\u2018\u0130LA\u00c7TA TEDAR\u0130K\u00c7\u0130 SIKINTISI YA\u015eIYORUZ\u2019<\/strong><\/p>\n

Bu hastalar\u0131n ihtiya\u00e7lar\u0131n\u0131 duyurmaya \u00e7al\u0131\u015ft\u0131klar\u0131n\u0131 ifade eden Elemenler \u015funlar\u0131 s\u00f6yledi:<\/p>\n

\u201cBu y\u0131k\u0131c\u0131 bir hastal\u0131k. Nadir g\u00f6r\u00fclen hastal\u0131klardan biri olarak kabul ediliyor. \u0130lk ba\u015flarda hi\u00e7bir semptom g\u00f6stermemi\u015fti. Zamanla el hareketlerinde iyice e\u011filme oldu. Bu hastal\u0131k, Yunanca \u2018dans\u2019 anlam\u0131na geliyor.<\/p>\n

S\u00fcrekli eli, kolu hareket halinde. Denge bozukluklar\u0131 ya\u015f\u0131yor. \u0130leriki d\u00f6nemlerde yutma s\u0131k\u0131nt\u0131lar\u0131 ya\u015fayacak. Yatalak duruma gelme ihtimali var. Hastal\u0131\u011f\u0131 yava\u015flatmak i\u00e7in kullan\u0131lmas\u0131 gereken ilaca tedarik\u00e7i s\u0131k\u0131nt\u0131s\u0131 nedeniyle ula\u015fam\u0131yoruz.<\/p>\n

7 y\u0131l \u00f6ncesine kadar normal bir hayat\u0131m\u0131z vard\u0131. Ev han\u0131m\u0131yd\u0131. \u0130kinci \u00e7ocu\u011fumuz 3 ya\u015f\u0131ndayken bu s\u0131k\u0131nt\u0131lar ba\u015flad\u0131. Bu genetik hastal\u0131\u011f\u0131n nesilden nesile ge\u00e7i\u015f yapt\u0131\u011f\u0131n\u0131 \u00f6\u011frendim.<\/p>\n

\u00c7ocuklar\u0131ma ge\u00e7me olas\u0131l\u0131\u011f\u0131 da var. Bu nedenle endi\u015feliyim. Bu t\u00fcr hastal\u0131klarda evlilik \u00f6ncesi test yap\u0131lmas\u0131 laz\u0131m. SMA hastalar\u0131 i\u00e7in bu test uygulan\u0131yor. T\u00fcp bebek y\u00f6ntemiyle sa\u011fl\u0131kl\u0131 bireyler d\u00fcnyaya getirilip hastal\u0131\u011f\u0131n \u00f6n\u00fcne ge\u00e7ilebilir\u201d<\/p>\n

\"\"<\/p>\n

\u2018VEREB\u0130LD\u0130\u011e\u0130M T\u00dcM DESTE\u011e\u0130 VERECE\u011e\u0130M\u2019<\/strong><\/p>\n

Huntington hastal\u0131\u011f\u0131n\u0131n g\u00fcnl\u00fck ya\u015fam\u0131 etkileyen bir\u00e7ok zorlu\u011fu oldu\u011funu aktaran Elemenler, \u201c\u00c7al\u0131\u015ft\u0131\u011f\u0131m i\u00e7in g\u00fcnd\u00fcz annem geliyor. Yeme\u011fini yediriyor, ben gelene kadar onunla ilgilenmesi gerekiyor. Denge bozuklu\u011fu oldu\u011fu i\u00e7in bir g\u00fcn balkondan toprak zemine d\u00fc\u015ft\u00fc. Allah yard\u0131mc\u0131s\u0131 oldu, atlatt\u0131k\u201d ifadelerini kulland\u0131.<\/p>\n

E\u015finin kendisini ifade etmeye \u00e7al\u0131\u015ft\u0131\u011f\u0131n\u0131 ancak s\u00f6ylediklerinin anla\u015f\u0131lamad\u0131\u011f\u0131n\u0131 aktaran Elemenler, \u015f\u00f6yle konu\u015ftu:<\/p>\n

\u201cBu duruma benzer olaylar\u0131, televizyonda g\u00f6r\u00fcyordum. \u2018Biz de engelli aday\u0131 olabiliriz\u2019 diye d\u00fc\u015f\u00fcn\u00fcyordum. Benim de ba\u015f\u0131ma geldi. \u0130nsanlar\u0131 bilin\u00e7lendirmek istiyorum. \u00c7\u00fcnk\u00fc hastal\u0131\u011f\u0131n \u00f6n\u00fcne ge\u00e7mek m\u00fcmk\u00fcn.<\/p>\n

Tedavisi yok ama ileriki nesillere ge\u00e7mesini engelleyebiliriz. Evlili\u011fi kar\u015f\u0131l\u0131kl\u0131 anla\u015f\u0131p, bitirmemi \u00f6nerenler oluyor ama bunun taraftar\u0131 de\u011filim. Normal biri gibi ya\u015fayam\u0131yorum ama b\u0131rakmak da olmaz. Gereken t\u00fcm deste\u011fi verece\u011fim. Devletimizden ilac\u0131n bir an \u00f6nce temin edilmesini istiyorum. Hastal\u0131k ilerliyor. Tedavi umudumuz yok\u201d (DHA)<\/p>\n","protected":false},"excerpt":{"rendered":"

\u0130zmir’de fabrika i\u015f\u00e7isi C\u00fcneyt Elemenler 7 y\u0131l \u00f6nce 20 bin ki\u015fide bir g\u00f6r\u00fclen Huntington hastal\u0131\u011f\u0131 te\u015fhisi koyulan \u00d6zlem Elemenler’e \u00e7ocuk gibi …<\/p>\n","protected":false},"author":1,"featured_media":10294,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[30],"tags":[188,964,82,902,181],"class_list":["post-10293","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-saglik","tag-bas","tag-esi","tag-gun","tag-hastaligi","tag-hastalik"],"_links":{"self":[{"href":"https:\/\/haberulus.net\/index.php?rest_route=\/wp\/v2\/posts\/10293","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/haberulus.net\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/haberulus.net\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/haberulus.net\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/haberulus.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=10293"}],"version-history":[{"count":1,"href":"https:\/\/haberulus.net\/index.php?rest_route=\/wp\/v2\/posts\/10293\/revisions"}],"predecessor-version":[{"id":10295,"href":"https:\/\/haberulus.net\/index.php?rest_route=\/wp\/v2\/posts\/10293\/revisions\/10295"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/haberulus.net\/index.php?rest_route=\/wp\/v2\/media\/10294"}],"wp:attachment":[{"href":"https:\/\/haberulus.net\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=10293"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/haberulus.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=10293"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/haberulus.net\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=10293"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}