{"id":5506,"date":"2021-09-02T15:13:45","date_gmt":"2021-09-02T15:13:45","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5506"},"modified":"2024-02-09T14:24:01","modified_gmt":"2024-02-09T14:24:01","slug":"cyanne","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2021\/09\/02\/cyanne\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Cyanne"},"content":{"rendered":"

LGMD \"Spotlight R\u00f6portaj\u0131\"
\n<\/strong><\/p>\n

\"\"<\/p>\n

\u0130sim<\/strong>: Cyanne<\/p>\n

Ya\u015f<\/strong>:\u00a0 29<\/p>\n

\u00dclke<\/strong>: G\u00fcney Avustralya<\/p>\n

LGMD Alt Tipi<\/strong>: LGMD Tip 2i \/ R9 Distroglikan ile ili\u015fkili<\/p>\n

Ka\u00e7 ya\u015f\u0131nda te\u015fhis konuldu?<\/strong>?<\/p>\n

Bana hen\u00fcz 2 ya\u015f\u0131ndayken kas distrofisi te\u015fhisi kondu. LGMD Tip 2i oldu\u011fumu ancak 21 ya\u015f\u0131mda \u00f6\u011frendim. Ya da \u015fimdi ad\u0131 de\u011fi\u015ftirildi\u011fi i\u00e7in R9.<\/p>\n

\u0130lk belirtileriniz neydi?<\/strong><\/p>\n

Annemin fark etti\u011fi ilk belirti, bebek y\u00fcr\u00fctecindeyken ba\u015f\u0131m\u0131 dik tutamamamd\u0131.
\nAyr\u0131ca, benim ya\u015f\u0131mdakiler emeklerken ben emeklemiyordum. Sadece fiziksel olarak \u00e7ok zorland\u0131m.<\/p>\n

\u0130lk fark etti\u011fim belirti, di\u011fer \u00e7ocuklara ayak uyduramad\u0131\u011f\u0131m zamand\u0131. Onlar kadar h\u0131zl\u0131 de\u011fildim ama bu beni hi\u00e7 rahats\u0131z etmedi! Farkl\u0131 oldu\u011fumu biliyordum ve bunu sorun etmiyordum.<\/p>\n

LGMD hastas\u0131 olan ba\u015fka aile \u00fcyeleriniz var m\u0131?<\/strong>?<\/strong><\/p>\n

\u0130kiz k\u0131z karde\u015fimde de LGMD2i var, ancak aile hatt\u0131nda bilinen ba\u015fka bir vaka yok.<\/p>\n

LGMD ile ya\u015faman\u0131n en b\u00fcy\u00fck zorluklar\u0131n\u0131n ne oldu\u011funu d\u00fc\u015f\u00fcn\u00fcyorsunuz?<\/strong>?<\/p>\n

Ba\u011f\u0131ms\u0131zl\u0131\u011f\u0131m\u0131 kaybetmekle m\u00fccadele ediyorum. Zamanla k\u00f6t\u00fcle\u015ftik\u00e7e daha da ula\u015f\u0131lmaz olmaya devam ediyor. Ya\u015famda oldu\u011fu gibi. Hayalimdeki i\u015fe ula\u015fabilecek miyim? Hayallerimdeki adamla tan\u0131\u015fabilecek miyim? Sevdi\u011fim \u015feyleri yapmaya daha ne kadar devam edebilirim?<\/p>\n

LGMD ile ya\u015farken kar\u015f\u0131la\u015ft\u0131\u011f\u0131m di\u011fer zorluklardan biri de insanlar\u0131n \u00e7o\u011fu zaman sadece tekerlekli sandalyemi g\u00f6rmeleri. \u0130\u00e7inde oturan ki\u015fiyi g\u00f6rm\u00fcyorlar. \u00c7evremde ve daha geni\u015f \u00e7apta fark\u0131ndal\u0131k yaratarak bunu de\u011fi\u015ftirmek i\u00e7in \u00e7ok \u00e7al\u0131\u015f\u0131yorum. Engelli insanlar\u0131n da insan oldu\u011funu g\u00f6stermek ve a\u00e7\u0131klamak. Herkesle ayn\u0131 istek ve ihtiya\u00e7lara sahibiz.<\/p>\n

En b\u00fcy\u00fck ba\u015far\u0131n\u0131z nedir?<\/strong><\/p>\n

Vay can\u0131na, \u00f6zge\u00e7mi\u015fimi kopyalay\u0131p buraya yap\u0131\u015ft\u0131racakm\u0131\u015f\u0131m gibi hissediyorum. Ha ha!<\/p>\n

Kariyer yollar\u0131m\u0131 de\u011fi\u015ftirdi\u011fim i\u00e7in y\u0131llar boyunca \u00e7ok fazla \u00e7al\u0131\u015fma yapt\u0131m. En az 10 y\u0131l\u0131m\u0131 mimarl\u0131k, i\u00e7 tasar\u0131m ve dekorasyon \u00fczerine \u00e7al\u0131\u015farak ge\u00e7irdim. Ancak, o zamandan beri kariyer yollar\u0131m\u0131 de\u011fi\u015ftirdim, \u015fimdi dan\u0131\u015fmanl\u0131k yap\u0131yorum ve Sanat Terapisine bak\u0131yorum. Y\u0131llar boyunca muhtemelen toplam 20 kurs ald\u0131m. Bu kurslardan baz\u0131lar\u0131 sadece g\u00fcnl\u00fck kurslar, panik yapmay\u0131n! Ayr\u0131ca \u00e7ok fazla g\u00f6n\u00fcll\u00fcl\u00fck yapt\u0131m. Ayr\u0131ca, sesini duyurmakta zorlananlar\u0131n savunucusu oldum. Plaj\u0131m\u0131n tekerlekli sandalye eri\u015fimine uygun hale getirilmesinde g\u00f6rev ald\u0131m. Plaj tekerlekli sandalyeleri ve plaj matlar\u0131 i\u00e7in para toplad\u0131m. Ayr\u0131ca bir Yer De\u011fi\u015ftirme Tesisi i\u00e7in de \u00e7ok \u00e7al\u0131\u015ft\u0131m. Ve \u00e7ok daha fazlas\u0131.<\/p>\n

Y\u0131llar boyunca etkinliklerde ve forumlarda topluluk \u00f6n\u00fcnde konu\u015fmalar yapt\u0131m, Kent Konseyi ile yak\u0131n \u00e7al\u0131\u015ft\u0131m ve Parlamento Binas\u0131'nda bulundum. Etkinliklere ve forumlara davet edildim ve \u00f6d\u00fcller kazand\u0131m. Kendi i\u015fim bile var. Bu sadece buz da\u011f\u0131n\u0131n g\u00f6r\u00fcnen k\u0131sm\u0131!<\/p>\n

LGMD bug\u00fcn oldu\u011funuz ki\u015fi olman\u0131zda sizi nas\u0131l etkiledi?<\/strong>?<\/strong><\/p>\n

Oh, kesinlikle beni etkiledi! Bug\u00fcn yapt\u0131\u011f\u0131m \u015feyleri LGMD sayesinde yap\u0131yorum. E\u011fer bu olmasayd\u0131 bug\u00fcn ayn\u0131 ki\u015fi olaca\u011f\u0131m\u0131 sanm\u0131yorum.<\/p>\n

\u00c7ok daha sab\u0131rl\u0131, a\u00e7\u0131k fikirli ve ayaklar\u0131 yere basan biriyim, her \u015feyin zorluklar olmadan gelmeyece\u011fini anl\u0131yorum. Bir g\u00fcn bu yetene\u011fimi de kaybedebilece\u011fimi bilerek, \u00e7izim veya resim gibi hala yapabildi\u011fim \u015feyleri takdir ediyorum. Ama her zaman g\u00fc\u00e7l\u00fc bir zihne sahip olaca\u011f\u0131m. Fiziksel olarak bir \u015feyler yapma yetene\u011fimi kaybedebilirim ama g\u00fc\u00e7l\u00fc ve sa\u011fl\u0131kl\u0131 bir zihnim var ve bunu \u00f6lene kadar kullanaca\u011f\u0131m!<\/p>\n

San\u0131r\u0131m her zaman insanlara yard\u0131m etmek i\u00e7in g\u00fc\u00e7l\u00fc bir istek duymu\u015fumdur. Birazc\u0131k yard\u0131m\u0131n uzun bir yol kat edece\u011fini biliyorum. \u0130htiyac\u0131 olanlara yard\u0131m etmek i\u00e7in dan\u0131\u015fmanl\u0131k ve belki de Sanat Terapisi yapaca\u011f\u0131m.<\/p>\n

D\u00fcnyan\u0131n LGMD hakk\u0131nda ne bilmesini istersiniz?<\/strong>?<\/p>\n

Bu \u00e7ok kolay. LGMD \u0130\u011eREN\u00c7!!! Limb-girdle musk\u00fcler distrofi, kas zay\u0131fl\u0131\u011f\u0131na neden olan bir durumdur. Kaslar\u0131n\u0131z eriyip gider, g\u00fc\u00e7 kazanamaz veya art\u0131ramazs\u0131n\u0131z. Kaslar\u0131n\u0131z zamanla k\u00f6t\u00fcle\u015fmeye devam eder ve bu da hayat\u0131 son derece zorla\u015ft\u0131rabilir. Hi\u00e7bir egzersiz veya a\u011f\u0131rl\u0131k kald\u0131rma, ortalama bir Jo gibi kas yapmama yard\u0131mc\u0131 olmaz. Bu, zamanla her zaman daha da k\u00f6t\u00fcle\u015fecek t\u00fcrden bir durum. Tedavisi ya da yard\u0131mc\u0131 olacak bir ila\u00e7 yok.<\/p>\n

\u00d6zellikle de tekerlekli sandalye eri\u015fimine uygun olmayan yerlerde ya\u015fam\u0131 zorla\u015ft\u0131r\u0131yor. Birbiri ard\u0131na gelen engeller!<\/p>\n

E\u011fer LGMD'niz <\/strong>\"<\/strong>yar\u0131n iyile\u015fmi\u015f olsayd\u0131, yapmak isteyece\u011finiz ilk \u015fey ne olurdu?<\/strong>?<\/p>\n

Anneme ve karde\u015flerime sar\u0131l\u0131rd\u0131m. Sar\u0131lma yetene\u011fimi y\u0131llar \u00f6nce kaybettim! Ayr\u0131ca hoplard\u0131m, z\u0131plard\u0131m ve atlard\u0131m! San\u0131r\u0131m kaybolurdum. Nereden ba\u015flayaca\u011f\u0131m\u0131 ya da ne yapaca\u011f\u0131m\u0131 bile bilemezdim!<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5507,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,35],"tags":[],"class_list":["post-5506","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2i"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Cyanne - 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=\"http:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2021\/09\/02\/cyanne\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Cyanne - 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