{"id":945,"date":"2015-07-06T10:35:46","date_gmt":"2015-07-06T15:35:46","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=945"},"modified":"2015-07-06T10:35:46","modified_gmt":"2015-07-06T15:35:46","slug":"ramesh","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2015\/07\/06\/ramesh\/","title":{"rendered":"OSOBA Z LGMD: Ramesh"},"content":{"rendered":"

07\/06\/2015:<\/strong>\u00a0<\/strong><\/p>\n

NAZWA<\/strong>: Ramesh \u00a0WIEK<\/strong>28 lat\"LGMD2B<\/a>
\nKRAJ<\/strong>: Indie
\nPodtyp LGMD<\/strong>: LGMD2B \/ Dysferlinopatia<\/p>\n

W JAKIM WIEKU ZOSTA\u0141E\u015a ZDIAGNOZOWANY?<\/strong>:
\nZacz\u0105\u0142em mie\u0107 objawy w wieku 19 lat, ale zdiagnozowano mnie dopiero w wieku oko\u0142o 22 lat.<\/p>\n

JAKIE BY\u0141Y PIERWSZE OBJAWY<\/strong>:
\nMoim pierwszym objawem by\u0142o to, \u017ce kiedy szed\u0142em do biura, nagle upad\u0142em. Skonsultowa\u0142em si\u0119 z lekarzem, kt\u00f3ry zasugerowa\u0142 fizykoterapi\u0119, ale to niewiele pomog\u0142o. Potem stwierdzili\u015bmy, \u017ce najlepiej b\u0119dzie skonsultowa\u0107 si\u0119 z lekarzem w Bangalore (Indie). Zrobiono mi biopsj\u0119 mi\u0119\u015bni i nerw\u00f3w oraz za\u0142o\u017cono gips na ka\u017cd\u0105 nog\u0119 na dwa miesi\u0105ce. Skierowa\u0142a mnie do neurologa na dalsze badania.<\/p>\n

CZY MASZ INNYCH CZ\u0141ONK\u00d3W RODZINY, KT\u00d3RZY CHORUJ\u0104 NA LGMD?<\/strong>: Nie<\/p>\n

CO UWA\u017bASZ ZA NAJWI\u0118KSZE WYZWANIE W \u017bYCIU Z LGMD?<\/strong>:
\nUwa\u017cam, \u017ce najwi\u0119kszym wyzwaniem w \u017cyciu z LGMD jest to, \u017ce ludziom trudno jest j\u0105 zrozumie\u0107. Nie jest \u0142atwo opisa\u0107 komu\u015b LGMD. Wiele os\u00f3b uwa\u017ca, \u017ce przesadzam lub nawet k\u0142ami\u0119, \u017ce cierpi\u0119 na t\u0119 chorob\u0119. Poza sam\u0105 chorob\u0105, uwa\u017cam, \u017ce brak dost\u0119pno\u015bci i postawy spo\u0142eczne wobec os\u00f3b niepe\u0142nosprawnych s\u0105 bardzo ograniczaj\u0105ce. Chcia\u0142bym, aby ludzie byli bardziej otwarci na poznawanie tych chor\u00f3b i zrozumienie, jak si\u0119 ich pozby\u0107.<\/p>\n

JAKIE JEST TWOJE NAJWI\u0118KSZE OSI\u0104GNI\u0118CIE?<\/strong>:
\nMoim najwi\u0119kszym osi\u0105gni\u0119ciem jest to, \u017ce uda\u0142o mi si\u0119 pracowa\u0107 i pracowa\u0107 na sw\u00f3j w\u0142asny spos\u00f3b.<\/p>\n

JAK CHOROBA ALZHEIMERA WP\u0141YN\u0118\u0141A NA TO, \u017bE STA\u0141E\u015a SI\u0118 OSOB\u0104, KT\u00d3R\u0104 JESTE\u015a DZISIAJ?<\/strong>:
\nNauczy\u0142am si\u0119 docenia\u0107 ludzi, kt\u00f3rzy mi pomagaj\u0105, mie\u0107 cierpliwo\u015b\u0107, zachowa\u0107 nadziej\u0119 i unika\u0107 depresji, by\u0107 wdzi\u0119czn\u0105 za wszystko, rozumie\u0107 ludzi, kt\u00f3rzy nie s\u0105 w takiej samej sytuacji jak ja i kt\u00f3rzy s\u0105 w trudnej sytuacji, docenia\u0107 to, co mam i by\u0107 oszcz\u0119dn\u0105, dawa\u0107 wi\u0119cej mi\u0142o\u015bci mojej rodzinie ka\u017cdego dnia, jakby to by\u0142 ostatni dzie\u0144. Nauczy\u0142am si\u0119 by\u0107 cierpliwa i akceptowa\u0107 fakt, \u017ce ka\u017cdy potrzebuje pomocnej d\u0142oni!<\/p>\n

CO CHCIA\u0141BY\u015a, ABY \u015aWIAT DOWIEDZIA\u0141 SI\u0118 O LGMD?<\/strong>:
\nNawet wi\u0119kszo\u015b\u0107 specjalist\u00f3w medycznych nie zdaje sobie sprawy z tego stanu, musz\u0105 by\u0107 tego \u015bwiadomi i uczy\u0107 pacjent\u00f3w, jak by\u0107 bezpiecznym i wymagaj\u0105cym wobec \u017cycia.<\/p>\n

GDYBY JUTRO MO\u017bNA BY\u0141O \"WYLECZY\u0106\" CHOROB\u0118 ALZHEIMERA, CO BY\u0141OBY PIERWSZ\u0104 RZECZ\u0104, KT\u00d3R\u0104 CHCIA\u0141BY\u015a ZROBI\u0106?<\/strong>:
\nPrzede wszystkim chcia\u0142bym pogratulowa\u0107 ka\u017cdemu lekarzowi, kt\u00f3ry pom\u00f3g\u0142 mi osobi\u015bcie. Najwa\u017cniejsze jest to, \u017ce chcia\u0142bym otworzy\u0107 blog o tej chorobie i b\u0119d\u0119 prowadzi\u0142 i wspiera\u0142 pacjent\u00f3w, jak przezwyci\u0119\u017cy\u0107 t\u0119 chorob\u0119. Wiem, jak cierpi\u0119 z powodu tej choroby. Nie dam szansy innym cierpie\u0107 ponownie.<\/p>","protected":false},"excerpt":{"rendered":"

07\/06\/2015:\u00a0 NAME: Ramesh \u00a0AGE: 28 yrs. old COUNTRY: India LGMD […]<\/p>","protected":false},"author":1,"featured_media":946,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[21,30,23],"class_list":["post-945","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-dysferlinopathy","tag-india","tag-lgmd2b"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Ramesh<\/title>\n<meta name=\"description\" content=\"Ramesh who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares his experience in living with this progressive neuro-muscular disease.\" \/>\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\/pl\/individuals-with-lgmd-interviews\/2015\/07\/06\/ramesh\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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