12/10/2015

名前:  Michal   年齢: 35 yrs. old

国名: Poland

LGMDサブタイプ: Unknown

 

何歳で診断を受けたか:

I was diagnosed when I was 25 years old.

最初の症状は？:

When I was a baby, my neck muscles were too weak and I had difficulty holding my head up.  I was delayed and didn’t start to walk until I was 4year old.  I stopped walking at the age of 14.

ご家族にLGMDの方はいらっしゃいますか？

NO , I’m the only person in my family who has this disease.

LGMDと共に生きていく上で、最も困難だと感じることは何ですか？: For me the greatest challenge is that I cannot do some things such as walking, running. stand without help, get dressed, etc.   I tried to control my activities so that I have enough energy to do the activities that I want to do.

あなたの最大の功績は何ですか？:

One of the biggest achievement in my life is that I have real great parents, friends, and colleagues who encourage me to live a fairly optimistic life and let me forget about my disability.

LGMDは今のあなたにどのような影響を与えていますか？

I have become more insensitive to pain and I’m not fearful of any challenges

LGMDについて世界に知ってもらいたいことは？:

I want the world to know that people with LGMD may need more help to live independently – such as a personal care attendant,  improved access to adaptive and assistive equipment as well as medicines.  A cure and treatment is needed to treat all the LGMD patients.

もし明日、あなたのLGMDが "治る "としたら、まず何をしたいですか？:

I think if I were cure tomorrow, I would run and do everything I never could do!

 

LGMDスポットライト・インタビュー」をもっと読みたい方、または今後のインタビューに志願したい方は、ウェブサイトhttps://www.lgmd-info.org/spotlight-interviews。