LGMD "焦点访谈"

名称:     Chuck                  年龄:  63 years old

国家:   Canada

LGMD 子类型:   LGMD 2L/R12 Anoctamin5-related

您在几岁时被确诊? 

 I was diagnosed at the age of 50.

您最初的症状是什么？  

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.

您有其他家庭成员患有 LGMD 吗？  

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

您认为在与 LGMD 最大的挑战是什么？? 

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

您最大的成就是什么？  

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. 

您希望世界了解 LGMD 的哪些方面？?

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.