06/25/2015:

名称:  Rod   年齢: 65 Yrs. Old

国名:アメリカ

LGMDサブタイプ: LGMD2L /  Anoctaminopathy

 

何歳で診断を受けたか:

I was diagnosed at the age of 49.

最初の症状は？:

My first symptoms included difficulty going up stairs and calf weakness.

ご家族にLGMDの方はいらっしゃいますか？

いいえ、LGMDと診断された家族は私だけです。

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？:

The greatest challenges that my LGMD2L presents are:  1)  reduced mobility and 2) not being able to participate in sports that I love such as surfing, snow skiing and water-skiing.

あなたの最大の功績は何ですか？:

My greatest accomplishment are my two wonderful, mature and beautiful daughters!

LGMDは今のあなたにどのような影響を与えていますか？

Living with LGMD has shown me the way to strength, patience and empathy.

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 LGMD exists and what it is.  Most people have never heard of it.

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？:

The first thing that I would do if my LGMD were cured tomorrow would be to go to Slick Rock country in Utah and go for a long hike…with some river fly fishing thrown in at the end!