LGMD "スポットライト・インタビュー"

名称:     Chuck                  年齢:  63 years old

国名:   Canada

LGMDサブタイプ:   LGMD 2L/R12 Anoctamin5-related

何歳で診断を受けたか? 

 I was diagnosed at the age of 50.

最初の症状は何でしたか？  

When I went into the hospital due to a stroke the Doctors noticed that all the muscles were gone from my back and bones were protruding.

LGMDを患っている家族が他にいますか？  

No, I am the only one with LGMD in my family.

LGMDと共に生きていく上で LGMDと共に生きる上で? 

The greatest challenge is seeing myself weaken and having to do less activities.

あなたの最大の功績は何ですか？  

Besides my grandkids, I was a siding expert and designed a measuring guide for D.Y.I. installation that is now the standard for North America.   Also, a siding & shingle display that I designed and built was installed in every Home Depot in North America. 

I raise money and awareness of MD with my table set ups.  Each year I usually raise about $12,000.00

I was also the president of the London, Ontario chapter of Muscular Dystrophy for 4 years.

How has LGMD influenced you into becoming the person you are today?  

Being unable to participate in things I used to be able to do I had to reinvent myself.  I saw a use for my design and marketing skills and now raise $12,000 every year for MDC   I enjoy being able to make a difference and raise awareness of MD and find this very rewarding. 

LGMDについて世界に知ってもらいたいことは？?

That it attacks your leg muscles 1^st.  That it is a hereditary muscle disease.

That I have found out how inaccessible many places are for me because they have steps.

If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do?

If I was cured tomorrow, I would book a scuba diving trip to Australia.