{"id":2697,"date":"2019-04-01T16:00:07","date_gmt":"2019-04-01T21:00:07","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2697"},"modified":"2019-04-01T16:00:07","modified_gmt":"2019-04-01T21:00:07","slug":"individual-with-lgmd-tasha","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2019\/04\/01\/individual-with-lgmd-tasha\/","title":{"rendered":"LGMD'L\u0130 B\u0130REY: Tasha"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

\"LGMD Spotlight\nR\u00f6portaj\"<\/strong><\/p>\n\n\n\n

\u0130sim:<\/strong>  Tasha                 Ya\u015f<\/strong>: 27<\/p>\n\n\n\n

\u00dclke:<\/strong> Birle\u015fik Devletler\nDevletler<\/p>\n\n\n\n

LGMD Alt Tipi: LGMD2B<\/p>\n\n\n\n

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

Bana 12 ya\u015f\u0131mda te\u015fhis konuldu. 6 ya\u015f\u0131ndayd\u0131m.inci<\/sup> s\u0131n\u0131f \u00f6\u011frencisi\nilkokuldayken.<\/p>\n\n\n\n

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

En erken belirtiler ben k\u00fc\u00e7\u00fck bir \u00e7ocukken ortaya \u00e7\u0131kt\u0131. Annemin dedi\u011fi gibi\nBir \u00e7im par\u00e7as\u0131na tak\u0131l\u0131p d\u00fc\u015fece\u011fimi a\u00e7\u0131klard\u0131m. Ger\u00e7ekten fark ettik\nSoftbol oynarken bir \u015feyler ters gidiyordu ve do\u011fru ko\u015fam\u0131yordum. Ben de\nomuzlar\u0131m\u0131 geriye yaslar, karn\u0131m\u0131 d\u0131\u015far\u0131 \u00e7\u0131kar\u0131r ve ayak parmaklar\u0131m\u0131n ucunda ko\u015far\u0131m. Buna\n\"Parlayan parmaklar\" lakab\u0131n\u0131 ald\u0131m. Ayr\u0131ca fark ettik ki sa\u011f kolum\ndirsekten tam olarak d\u00fczelmiyordu.<\/p>\n\n\n\n

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

LGMD te\u015fhisi konulan tek ki\u015fi benim. Ben\nUmar\u0131m ba\u015fka kimsede de olmaz. <\/p>\n\n\n\n

En b\u00fcy\u00fck zorluklar olarak neleri g\u00f6r\u00fcyorsunuz?\nLGMD ile ya\u015famda<\/strong>:<\/p>\n\n\n\n

LGMD ile ya\u015faman\u0131n en b\u00fcy\u00fck zorlu\u011fu hareketliliktir. \u015eu ana kadar\n21 ya\u015f\u0131ndayd\u0131m, bir kat merdiveni zorlanmadan ko\u015farak \u00e7\u0131kabiliyordum ve hatta\nYolda birka\u00e7\u0131n\u0131 atlad\u0131m. Yirmili ya\u015flar\u0131ma geldi\u011fimde semptomlar\u0131m\ng\u00f6zle g\u00f6r\u00fcl\u00fcr \u015fekilde k\u00f6t\u00fcle\u015fti. \u015eu anda 27 ya\u015f\u0131nday\u0131m ve engebeli y\u00fczeyler ve merdivenlerle m\u00fccadele ediyorum.\ns\u0131k d\u00fc\u015fmeler. E\u011fer bir merdivende t\u0131rabzan yoksa, ben\ns\u00fcr\u00fcnmek zorunda kal\u0131yorum. E\u011fer y\u00fcr\u00fcme y\u00fczeyinde hafif bir e\u011fim varsa, ben\nyoku\u015f yukar\u0131 d\u00fcz bacaklarla ve \u00e7ok yava\u015f bir tempoda y\u00fcr\u00fcy\u00fcn. Ne yaz\u0131k ki, merdivenler\ntoplum i\u00e7indeyken bana endi\u015fe veriyor. Her ne pahas\u0131na olursa olsun merdivenlerden ka\u00e7\u0131nmaya \u00e7al\u0131\u015f\u0131yorum.\nhalka a\u00e7\u0131k. Ben 4 y\u0131l \u00f6nce bir ev ald\u0131m ve \u00f6zellikle merdivenli bir ev ald\u0131m.\neve. Bu \u015fekilde kendi evimin mahremiyetinde merdiven \u00e7\u0131kmaya devam edebilirim\nve g\u00fcnl\u00fck hayat\u0131mda merdiven y\u00fcr\u00fcy\u00fc\u015f\u00fc yapmaya devam ediyorum. En b\u00fcy\u00fck zorlu\u011fum\nAncak evimdeki merdivenler, bir \u00e7ama\u015f\u0131r sepetini merdivenlerden yukar\u0131 ta\u015f\u0131maya\nMerdivenler. Bunu yapma \u015feklimi de\u011fi\u015ftirdim. Dizlerimin \u00fczerine \u00e7\u00f6k\u00fcyorum ve\nher seferinde bir ad\u0131m yukar\u0131 \u00e7\u0131k\u0131n (bu benim i\u00e7in en iyisi gibi g\u00f6r\u00fcn\u00fcyor). Bir \u015fey benim\nkocam ve ben biraz endi\u015feliyiz.\n\u00e7ocuklar i\u00e7in deneyin. Semptomlar\u0131m\u0131n daha da k\u00f6t\u00fcle\u015febilece\u011fini biliyorum.\nbir bebe\u011fin merdivenlerden inip \u00e7\u0131kmas\u0131 ideal de\u011fil. Ayr\u0131ca bebek arabas\u0131ndan inmekte de zorlan\u0131yorum.\nal\u00e7ak sandalyeler veya kanepeler. <\/p>\n\n\n\n

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

En b\u00fcy\u00fck ba\u015far\u0131m Hem\u015firelik b\u00f6l\u00fcm\u00fcnden mezun olmakt\u0131.\nderece. Hem\u015fireler olarak ne kadar me\u015fgul oldu\u011fumuzu hepimiz biliyoruz ve ben bu i\u015fi yapabildi\u011fim i\u00e7in \u00e7ok minnettar\u0131m.\nkat\u0131nda kadrolu hem\u015fire olarak \u00e7al\u0131\u015fmaya devam ediyorum ve bu da beni LGMD'de aktif tutuyor.\nBa\u015fkalar\u0131na yard\u0131m edebildi\u011fim bir Rehabilitasyon departman\u0131nda \u00e7al\u0131\u015fma zevkine sahibim\nve onlarla bir\u00e7ok y\u00f6nden ili\u015fki kurabilir.<\/p>\n\n\n\n

Ayr\u0131ca \u015funu da belirtmek isterim ki\nTony ad\u0131nda bir kocam var. Diyet, egzersiz ve sa\u011fl\u0131k ipu\u00e7lar\u0131 konusunda bana yard\u0131mc\u0131 olmaya \u00e7al\u0131\u015f\u0131yor\nkilomu korumak i\u00e7in. Ayr\u0131ca MD'yi ara\u015ft\u0131rmak i\u00e7in zaman ay\u0131r\u0131yor ve ne yapabilece\u011fimizi\nilerlemeyi yava\u015flatmak i\u00e7in. Bana elini uzatmak ya da yard\u0131m etmek i\u00e7in her zaman yan\u0131mda.\n\u0130htiyac\u0131m oldu\u011funda beni merdivenlerden \u00e7\u0131kar\u0131yor. Bir kere bile beni ta\u015f\u0131mak zorunda kalmaktan \u015fikayet etmedi.\n\u00c7ama\u015f\u0131rlar\u0131 merdivenlerden yukar\u0131 \u00e7\u0131kar\u0131yor ya da benimle y\u00fcr\u00fcrken farkl\u0131 bir rota izliyor. I\nOna sahip oldu\u011fum i\u00e7in ger\u00e7ekten \u00e7ok mutluyum!<\/p>\n\n\n\n

LGMD sizi nas\u0131l etkiledi?\nBug\u00fcn oldu\u011fun ki\u015fi:<\/strong><\/p>\n\n\n\n

LGMD beni \u015fu an oldu\u011fum ki\u015fi olarak ger\u00e7ekten \u015fekillendirdi\nBug\u00fcn. Bunun beni daha al\u00e7akg\u00f6n\u00fcll\u00fc yapt\u0131\u011f\u0131n\u0131 s\u00f6ylemek isterim. Her zaman derim ki, e\u011fer ben\nLGMD te\u015fhisi konulmasayd\u0131, muhtemelen onun\nherhangi bir sporu oynayabilir, imkans\u0131z gibi g\u00f6r\u00fcnen herhangi bir hedefi ba\u015farabilir ve\nben merkezlidir. LGMD hastas\u0131 oldu\u011fum i\u00e7in her g\u00fcn g\u00fc\u00e7l\u00fc olmak zorunday\u0131m. Bu sadece\nFiziksel olarak, ama zihinsel olarak da. Bir bak\u0131ma, bu beni daha inat\u00e7\u0131 yapt\u0131.\n\u00c7\u00fcnk\u00fc bir ba\u015fkas\u0131n\u0131n yard\u0131m\u0131na ihtiyac\u0131m olana kadar i\u015fleri kendi ba\u015f\u0131ma yapmaya \u00e7al\u0131\u015f\u0131yorum.\nMD'li bir RN olman\u0131n, hastalar\u0131ma hi\u00e7bir \u015feyin\nHayat kar\u015f\u0131n\u0131za ne \u00e7\u0131kar\u0131rsa \u00e7\u0131kars\u0131n, bu d\u00fcnyan\u0131n sonu de\u011fildir; de\u011fi\u015fiklikler\nsadece yap\u0131lmas\u0131 gerekiyor. MD'ye sahip olman\u0131n beni kendime g\u00fcvenmeye itti\u011fine kesinlikle inan\u0131yorum.\nCennetteki Babam\u0131z daha fazla. Beni iyile\u015ftirmesi i\u00e7in dua etti\u011fim gibi, beni kullanmas\u0131 i\u00e7in de dua ediyorum.\nLGMD ile ba\u015fkalar\u0131na ula\u015fman\u0131n yollar\u0131nda. Hepimiz \u015fu deyi\u015fi biliriz: \"Nas\u0131l oldu\u011funu bilmiyoruz\nG\u00fc\u00e7l\u00fc olmak tek se\u00e7ene\u011fimiz olana kadar g\u00fc\u00e7l\u00fcy\u00fcz.\" Bunun harika oldu\u011funu s\u00f6yleyebilirim.\nLGMD ile her g\u00fcn ya\u015faman\u0131n yolu. Kaslar\u0131m\u0131z zay\u0131flad\u0131\u011f\u0131nda bile g\u00fc\u00e7l\u00fc kalmal\u0131y\u0131z\nBiz. <\/p>\n\n\n\n

Aileme ve arkada\u015flar\u0131ma da bana g\u00f6sterdikleri destek i\u00e7in te\u015fekk\u00fcr etmek istiyorum.\nBana g\u00f6sterdikleri sab\u0131r ve sevgi. Her zaman yard\u0131m etmek i\u00e7in h\u0131zl\u0131 ve her zaman ilgili\nher \u015feyde bana. MD'ye sahip olmamla ilgili \u015faka yapt\u0131\u011f\u0131m\u0131z harika bir \u015fey de \u015fudur\n(\u00f6zellikle d\u00fc\u015ft\u00fc\u011f\u00fcmde ya da tak\u0131ld\u0131\u011f\u0131mda). \"Oh, MD'm devreye giriyor!\"<\/p>\n\n\n\n

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

D\u00fcnyan\u0131n bizim de herkes gibi insan oldu\u011fumuzu bilmesini isterim.\nBa\u015fka. MD olmayan biriyle ayn\u0131 \u015feyi yapabiliriz, ancak sadece\nde\u011fi\u015ftirmek ve zaman ay\u0131rmak zorunday\u0131z. Bu konuda hi\u00e7bir \u015fey yapmamay\u0131 ummak h\u00fcsn\u00fckuruntu olur.\nkimse bize bak\u0131p neyin yanl\u0131\u015f oldu\u011funu merak etmezdi, ancak bu g\u00fczel olurdu. Ben olsam\nMD hakk\u0131nda \u00e7ok \u015fey bilmeyenlere \u00f6nermek istedi\u011fim \u015fey, asla bilemeyece\u011finizdir.\nBirinin ne ile m\u00fccadele etti\u011fini. O ki\u015fiye daha fazla ac\u0131 ve zarar vermek yerine\nBirey olarak, bulutlu g\u00fcnlerinde onlar\u0131n g\u00fcne\u015f \u0131\u015f\u0131\u011f\u0131 olun.<\/p>\n\n\n\n

LGMD hastal\u0131\u011f\u0131n\u0131z yar\u0131n \"tedavi\" edilebilseydi, ne olurdu?\nyapmak isteyece\u011finiz ilk \u015fey<\/strong>:<\/p>\n\n\n\n

Her zaman s\u00f6ylerim, buraya geldi\u011fimde yapaca\u011f\u0131m ilk \u015fey\nCennet ya da LGMD'nin iyile\u015fmesi, ko\u015fabildi\u011fim kadar h\u0131zl\u0131 ko\u015fmakt\u0131r. Sadece bir mil ko\u015fabilmek\nve manzaray\u0131 izlerken m\u00fczi\u011fimi dinlemek m\u00fckemmel olurdu. <\/p>\n\n\n\n

*** Fark\u0131ndal\u0131k yaratmaya yard\u0131mc\u0131 olmak i\u00e7in l\u00fctfen bu g\u00f6nderiyi BE\u011eEN\u0130N, YORUM YAPIN ve PAYLA\u015eIN\nLGMD'nin!<\/p>\n\n\n\n

*** Daha fazla \"LGMD Spotlight R\u00f6portaj\u0131\" okumak veya\nYakla\u015fan bir r\u00f6portajda yer almak i\u00e7in g\u00f6n\u00fcll\u00fc olmak isterseniz, l\u00fctfen web sitemizi ziyaret edin\nhttps:\/\/www.lgmd-info.org\/spotlight-interviews <\/p>","protected":false},"excerpt":{"rendered":"

\u201cLGMD Spotlight Interview\u201d Name:  Tasha                 Age: 27 Country: United States […]<\/p>","protected":false},"author":1,"featured_media":2698,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[87],"class_list":["post-2697","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2b-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Tasha - 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=\"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2019\/04\/01\/individual-with-lgmd-tasha\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Tasha - 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