{"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\/ru\/individuals-with-lgmd-interviews\/2015\/05\/15\/marjolein\/","title":{"rendered":"INDIVIDUAL WITH LGMD: Marjolein"},"content":{"rendered":"

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

\u0418\u043c\u044f:<\/strong>\u00a0 Marjolein\u00a0\u00a0\"LGMD1B<\/a><\/p>\n

Age:<\/strong> 27 yrs. old<\/p>\n

\u0421\u0442\u0440\u0430\u043d\u0430:<\/strong> \u00a0\u00a0\u041d\u0438\u0434\u0435\u0440\u043b\u0430\u043d\u0434\u044b<\/p>\n

LGMD \u041f\u043e\u0434\u0442\u0438\u043f:<\/strong> \u00a0\u00a0LGMD1B \/ Laminopathy<\/p>\n

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

\u0412 \u043a\u0430\u043a\u043e\u043c \u0432\u043e\u0437\u0440\u0430\u0441\u0442\u0435 \u0432\u0430\u043c \u0431\u044b\u043b \u043f\u043e\u0441\u0442\u0430\u0432\u043b\u0435\u043d \u0434\u0438\u0430\u0433\u043d\u043e\u0437<\/strong>:<\/p>\n

I was diagnosed at the age of 4 with LGMD but the sub-type was unknown.\u00a0 At the age of 23 I had a DNA test done which was relatively new in Holland, and that is when they found out that I had LGMD type 1B.<\/p>\n

\u041a\u0430\u043a\u043e\u0432\u044b \u0431\u044b\u043b\u0438 \u0432\u0430\u0448\u0438 \u043f\u0435\u0440\u0432\u044b\u0435 \u0441\u0438\u043c\u043f\u0442\u043e\u043c\u044b<\/strong>:<\/p>\n

My mother noticed that I had trouble climbing the stairs.\u00a0 My sister is 1 year and 9 months younger and she could already climb stairs but I still had to use my arms to help me climb the stairs.\u00a0 I was also born with heterochromia iridum (two colored eyes (with one blind eye)) and a palato cisis (an opening in the palate) so my parents figured I had something more.<\/p>\n

\u0415\u0441\u0442\u044c \u043b\u0438 \u0443 \u0432\u0430\u0441 \u0434\u0440\u0443\u0433\u0438\u0435 \u0447\u043b\u0435\u043d\u044b \u0441\u0435\u043c\u044c\u0438, \u0441\u0442\u0440\u0430\u0434\u0430\u044e\u0449\u0438\u0435 LGMD:<\/strong><\/p>\n

No, I am the only one so far.\u00a0 We looked in to our history but couldn\u2019t find anything that said that others in the family had LGMD.<\/p>\n

\u0427\u0442\u043e, \u043f\u043e \u0432\u0430\u0448\u0435\u043c\u0443 \u043c\u043d\u0435\u043d\u0438\u044e, \u044f\u0432\u043b\u044f\u0435\u0442\u0441\u044f \u043d\u0430\u0438\u0431\u043e\u043b\u044c\u0448\u0435\u0439 \u043f\u0440\u043e\u0431\u043b\u0435\u043c\u043e\u0439 \u0432 \u0436\u0438\u0437\u043d\u0438 \u0441 LGMD<\/strong>:<\/p>\n

The greatest challenge is having to accept all of the losses regarding the physical things that I cannot do anymore.\u00a0 Sometimes it goes so that my head can\u2019t keep up.<\/p>\n

\u041a\u0430\u043a\u043e\u0435 \u0432\u0430\u0448\u0435 \u0441\u0430\u043c\u043e\u0435 \u0431\u043e\u043b\u044c\u0448\u043e\u0435 \u0434\u043e\u0441\u0442\u0438\u0436\u0435\u043d\u0438\u0435<\/strong>:<\/p>\n

My greatest accomplishments are finishing college, finding my soulmate and buying a house together.<\/p>\n

\u041a\u0430\u043a LGMD \u043f\u043e\u0432\u043b\u0438\u044f\u043b \u043d\u0430 \u0442\u043e, \u0447\u0442\u043e \u0432\u044b \u0441\u0442\u0430\u043b\u0438 \u0442\u0435\u043c \u0447\u0435\u043b\u043e\u0432\u0435\u043a\u043e\u043c, \u043a\u043e\u0442\u043e\u0440\u044b\u043c \u044f\u0432\u043b\u044f\u0435\u0442\u0435\u0441\u044c \u0441\u0435\u0433\u043e\u0434\u043d\u044f:<\/strong><\/p>\n

I don\u2019t really know because I don\u2019t know how it is to not have LGMD.\u00a0 I do have a lot of patience.\u00a0 Maybe that is because of all the waiting we have to do to get the things we need to function in our lives\u2026.you know, things like wheelchairs and other stuff.<\/p>\n

\u0427\u0442\u043e \u0432\u044b \u0445\u043e\u0442\u0438\u0442\u0435, \u0447\u0442\u043e\u0431\u044b \u043c\u0438\u0440 \u0443\u0437\u043d\u0430\u043b \u043e LGMD<\/strong>:<\/p>\n

LGMD is a very frustrating disease.\u00a0 People living with LGMD deal with losses day in and day out.<\/p>\n

\u0415\u0441\u043b\u0438 \u0431\u044b \u0432\u0430\u0448 LGMD \u043c\u043e\u0436\u043d\u043e \u0431\u044b\u043b\u043e \"\u0432\u044b\u043b\u0435\u0447\u0438\u0442\u044c\" \u0437\u0430\u0432\u0442\u0440\u0430, \u0447\u0442\u043e \u0431\u044b \u0432\u044b \u0445\u043e\u0442\u0435\u043b\u0438 \u0441\u0434\u0435\u043b\u0430\u0442\u044c \u0432 \u043f\u0435\u0440\u0432\u0443\u044e \u043e\u0447\u0435\u0440\u0435\u0434\u044c<\/strong>:<\/p>\n

If I could be cured tomorrow, I would dance with my boyfriend in a club all night!\u00a0 And, I would go on a hiking vacation.<\/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\/ru\/individuals-with-lgmd-interviews\/2015\/05\/15\/marjolein\/\" \/>\n<meta property=\"og:locale\" content=\"ru_RU\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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