{"id":701,"date":"2015-05-21T11:57:37","date_gmt":"2015-05-21T16:57:37","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=701"},"modified":"2015-05-21T11:57:37","modified_gmt":"2015-05-21T16:57:37","slug":"andrea","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/05\/21\/andrea\/","title":{"rendered":"LGMD\u500b\u4eba\uff1a\u30a2\u30f3\u30c9\u30ec\u30a2"},"content":{"rendered":"

05\/21\/2015:<\/p>\n

 <\/p>\n

\u540d\u524d<\/strong>\u00a0 Andrea \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u5e74\u9f62<\/strong>: 17 yrs. old\"LGMD1B<\/a><\/p>\n

\u56fd\u540d<\/strong>: Norway<\/p>\n

LGMD\u30b5\u30d6\u30bf\u30a4\u30d7<\/strong>: LGMD 1B \/ Laminopathy<\/p>\n

\u4f55\u6b73\u3067\u8a3a\u65ad\u3092\u53d7\u3051\u305f\u304b<\/strong>:<\/p>\n

I was about 6 months old when they discovered that something was wrong, but it wasn\u2019t until I was about 2 years old that they decided it was muscle dystrophy. I have probably had the disease my whole life. I was 7 years old when I got the diagnosis LGMD 1B.<\/p>\n

\u6700\u521d\u306e\u75c7\u72b6\u306f\uff1f<\/strong>:<\/p>\n

I couldn\u2019t hold my head up when I started sitting on my own.<\/p>\n

\u3054\u5bb6\u65cf\u306bLGMD\u306e\u65b9\u306f\u3044\u3089\u3063\u3057\u3083\u3044\u307e\u3059\u304b\uff1f<\/strong><\/p>\n

No, I am the only one with LGMD in my family. Both my parents have been tested and the results showed that I didn\u2019t inherit it, it was from a mutation.<\/p>\n

LGMD\u3068\u5171\u306b\u751f\u304d\u3066\u3044\u304f\u4e0a\u3067\u3001\u6700\u3082\u56f0\u96e3\u3060\u3068\u611f\u3058\u308b\u3053\u3068\u306f\u4f55\u3067\u3059\u304b\uff1f<\/strong>:<\/p>\n

The greatest challenges are that I can\u2019t do anything on my own. I need help with practically everything, like getting dressed, getting in and out of bed, and picking up stuff.<\/p>\n

\u3042\u306a\u305f\u306e\u6700\u5927\u306e\u529f\u7e3e\u306f\u4f55\u3067\u3059\u304b\uff1f<\/strong>:<\/p>\n

My greatest accomplishment is my mind. How I have a positive look on everything.<\/p>\n

LGMD\u306f\u4eca\u306e\u3042\u306a\u305f\u306b\u3069\u306e\u3088\u3046\u306a\u5f71\u97ff\u3092\u4e0e\u3048\u3066\u3044\u307e\u3059\u304b\uff1f<\/strong><\/p>\n

It has made me appreciate the small pleasures and made me a very positive person.<\/p>\n

LGMD\u306b\u3064\u3044\u3066\u4e16\u754c\u306b\u77e5\u3063\u3066\u3082\u3089\u3044\u305f\u3044\u3053\u3068\u306f\uff1f<\/strong>:<\/p>\n

I want the world to know that I am not chained to my wheelchair, the wheelchair is the most helpful aid I have. Without it I would be chained, it is my freedom. When some people see me they only see the wheelchair, the noise around me, and not me. The disease only affects my muscles and not my brain, I am a normal 17-year-old girl.<\/p>\n

\u3082\u3057\u660e\u65e5\u3001\u3042\u306a\u305f\u306eLGMD\u304c \"\u6cbb\u308b \"\u3068\u3057\u305f\u3089\u3001\u307e\u305a\u4f55\u3092\u3057\u305f\u3044\u3067\u3059\u304b\uff1f<\/strong>:<\/p>\n

I would jump, run up and down the stairs, pick up things, do all the normal things I never have been able to do!<\/p>","protected":false},"excerpt":{"rendered":"

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