LGMD “Spotlight Interview”

Имя:     Chuck                  Возраст:  63 years old

Страна:   Canada

LGMD Подтип:   LGMD 2L/R12 Anoctamin5-related

В каком возрасте вам был поставлен диагноз? 

 I was diagnosed at the age of 50.

Каковы были ваши первые симптомы?  

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.

Есть ли у вас другие члены семьи, страдающие LGMD?  

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

Что, по вашему мнению, представляет наибольшую трудность в жизни с LGMD? 

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

Каково ваше самое большое достижение?  

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. 

Что вы хотите, чтобы мир узнал о LGMD?

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.