Intervista a riflettori accesi sulla LGMD

Nome:     Chuck                  Età:  63 years old

Paese:   Canada

Sottotipo LGMD:   LGMD 2L/R12 Anoctamin5-related

A che età è stata fatta la diagnosi? 

 I was diagnosed at the age of 50.

Quali sono stati i primi SINTOMI?  

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.

Ha altri familiari affetti da LGMD?  

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

Quali sono, secondo lei, le maggiori sfide nel vivere con la LGMD? 

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

Qual è il suo più grande risultato?  

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. 

Cosa volete che il mondo sappia della 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.