{"id":662,"date":"2015-05-15T09:30:18","date_gmt":"2015-05-15T14:30:18","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=662"},"modified":"2015-05-15T09:30:18","modified_gmt":"2015-05-15T14:30:18","slug":"marjolein","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2015\/05\/15\/marjolein\/","title":{"rendered":"OSOBA Z LGMD: Marjolein"},"content":{"rendered":"

05\/15\/2015<\/p>\n

Imi\u0119 i nazwisko:<\/strong>\u00a0 Marjolein\u00a0\u00a0\"LGMD1B<\/a><\/p>\n

Wiek:<\/strong> 27 lat<\/p>\n

Kraj:<\/strong> \u00a0\u00a0Holandia<\/p>\n

Podtyp LGMD:<\/strong> \u00a0\u00a0LGMD1B \/ Laminopatia<\/p>\n

\u00a0<\/strong><\/p>\n

W jakim wieku zosta\u0142e\u015b zdiagnozowany?<\/strong>:<\/p>\n

W wieku 4 lat zdiagnozowano u mnie LGMD, ale podtyp by\u0142 nieznany. W wieku 23 lat wykonano u mnie test DNA, kt\u00f3ry by\u0142 stosunkowo nowy w Holandii, i wtedy okaza\u0142o si\u0119, \u017ce mam LGMD typu 1B.<\/p>\n

Jakie by\u0142y pierwsze objawy?<\/strong>:<\/p>\n

Moja mama zauwa\u017cy\u0142a, \u017ce mam problemy z wchodzeniem po schodach. Moja siostra jest m\u0142odsza o 1 rok i 9 miesi\u0119cy i potrafi\u0142a ju\u017c wchodzi\u0107 po schodach, ale ja nadal musia\u0142em u\u017cywa\u0107 r\u0105k, aby pom\u00f3c sobie w pokonywaniu schod\u00f3w. Urodzi\u0142em si\u0119 r\u00f3wnie\u017c z heterochromi\u0105 iridum (dwoje kolorowych oczu (z jednym niewidomym)) i palato cisis (otw\u00f3r w podniebieniu), wi\u0119c moi rodzice domy\u015blili si\u0119, \u017ce mam co\u015b wi\u0119cej.<\/p>\n

Czy masz innych cz\u0142onk\u00f3w rodziny cierpi\u0105cych na LGMD?<\/strong><\/p>\n

Nie, jak dot\u0105d jestem jedyny. Sprawdzili\u015bmy nasz\u0105 histori\u0119, ale nie mogli\u015bmy znale\u017a\u0107 niczego, co wskazywa\u0142oby, \u017ce inni cz\u0142onkowie rodziny chorowali na LGMD.<\/p>\n

Co uwa\u017casz za najwi\u0119ksze wyzwanie w \u017cyciu z LGMD?<\/strong>:<\/p>\n

Najwi\u0119kszym wyzwaniem jest zaakceptowanie wszystkich strat zwi\u0105zanych z fizycznymi rzeczami, kt\u00f3rych nie mog\u0119 ju\u017c robi\u0107. Czasami jest tak, \u017ce moja g\u0142owa nie nad\u0105\u017ca.<\/p>\n

Jakie jest twoje najwi\u0119ksze osi\u0105gni\u0119cie?<\/strong>:<\/p>\n

Moje najwi\u0119ksze osi\u0105gni\u0119cia to uko\u0144czenie college'u, znalezienie bratniej duszy i kupno wsp\u00f3lnego domu.<\/p>\n

Jak LGMD wp\u0142yn\u0119\u0142o na to, \u017ce sta\u0142e\u015b si\u0119 osob\u0105, kt\u00f3r\u0105 jeste\u015b dzisiaj:<\/strong><\/p>\n

Tak naprawd\u0119 nie wiem, bo nie wiem, jak to jest nie mie\u0107 LGMD. Mam du\u017co cierpliwo\u015bci. Mo\u017ce to dlatego, \u017ce musimy czeka\u0107 na rzeczy, kt\u00f3rych potrzebujemy, aby funkcjonowa\u0107 w naszym \u017cyciu.... wiesz, rzeczy takie jak w\u00f3zki inwalidzkie i inne rzeczy.<\/p>\n

Co chcia\u0142by\u015b, aby \u015bwiat dowiedzia\u0142 si\u0119 o LGMD?<\/strong>:<\/p>\n

LGMD to bardzo frustruj\u0105ca choroba. Osoby \u017cyj\u0105ce z LGMD ka\u017cdego dnia zmagaj\u0105 si\u0119 ze stratami.<\/p>\n

Gdyby jutro mo\u017cna by\u0142o \"wyleczy\u0107\" chorob\u0119 LGMD, co by\u0142oby pierwsz\u0105 rzecz\u0105, kt\u00f3r\u0105 chcia\u0142by\u015b zrobi\u0107?<\/strong>:<\/p>\n

Gdybym mog\u0142a zosta\u0107 wyleczona jutro, ta\u0144czy\u0142abym z moim ch\u0142opakiem w klubie ca\u0142\u0105 noc! I wybra\u0142abym si\u0119 na piesze wakacje.<\/p>","protected":false},"excerpt":{"rendered":"

05\/15\/2015 Name:\u00a0 Marjolein\u00a0\u00a0 Age: 27 yrs. old Country: \u00a0\u00a0The Netherlands […]<\/p>","protected":false},"author":1,"featured_media":663,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,44],"tags":[42,43,17],"class_list":["post-662","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd1b","tag-laminopathy","tag-lgmd1b","tag-netherlands"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Marjolein<\/title>\n<meta name=\"description\" content=\"Marjolein who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares her 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\/05\/15\/marjolein\/\" \/>\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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