LGMD Spotlight interview:   

名称:  Steven  年齢:  57 yrs. old

国名:   United States

LGMDサブタイプ :  LGMD (sub-type unknown)

 

何歳で診断を受けたか:

I was diagnosed at the age of 43.

最初の症状は？:

Vague symptoms have been present since birth.  I had a waddling gait, could not climb, had difficulty with stairs but the doctors could not diagnose the cause.  My mother always knew something was wrong….but what?  I was finally diagnosed with LGMD when heart problems began at the age of 43.

ご家族にLGMDの方はいらっしゃいますか？

Yes, most likely.  A second cousin (female) and my Grandpa Stone possibly had a form of MD because he was crippled from youth but back then they called it “rheumatism”.  I also had another second cousin (male) who was totally helpless and died young.

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 challenge are falls!  I was in Boy Scouts since the age of 11 and had difficulty keeping up with other boys in activities.  I have experienced numerous falls.  I require the rescue squad and neighbors to help me up as my wife is usually at work when I fall.

あなたの最大の功績は何ですか？:

My greatest accomplishments include fathering 4 children – 3 of which are still living.  I was able to hold a job for 25 years and volunteered with the local rescue squad for 38 years; beginning at the age of 16.  I continue to volunteer with the rescue squad but only answer the phone.

I served as a Boy Scout Leader (assistant scout Master for 25 years.)  Currently, I am now an organizational representative.  I was an Eagle Scout in 1978.  For my Eagle project, I did a church cassette tape ministry.  I continue to serve as the sound man at church today,

LGMDは今のあなたにどのような影響を与えていますか？

All of my life – everything that I do is a challenge!  But with work and determination, I have ‘Kept on Keeping on.’   I am determined to stay as active as I can be despite my LGMD.

LGMDについて世界に知ってもらいたいことは？:

LGMD makes every accomplishment a real challenge.  But work and the desire to succeed can make many things possible.  My whole life has been hard but it could be worse….especially if I had a different type of muscular dystrophy or I had a more severe form of LGMD.

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？:

If my LGMD could be cured tomorrow, I would want to be recertified as an EMT and then volunteer on active duty with the rescue squad.

 

LGMDスポットライト・インタビュー "をもっと読みたい方、またはボランティアでインタビューに参加したい方は、ウェブサイトをご覧ください： https://www.lgmd-info.org/spotlight-interviews