LGMD “Spotlight Interview”

Name:  Heidi  Age: 50 years old 

Country:  United States

LGMD Sub-Type:  LGMD2E

At what age were you diagnosed:

I was diagnosed at the age of 33.

What were your first symptoms:

I was often stiff and sore, especially my legs and then weakness.

Do you have other family members who have LGMD:

No one else in my family is diagnosed with LGMD.

What do you find to be the greatest challenges in living with LGMD:

One of my main challenges is daily pain and weakness.  When I was diagnosed, I was told that at some point I would be so weak that I would need a wheelchair.  Had no idea the pain that I would experience.  With the severe atrophy in my muscles, it puts too much pressure on my other muscles causing them to tear.

What is your greatest accomplishment:

My greatest accomplishment is that I am still able to walk with the assistance of a cane.

What do you want the world to know about LGMD:

Limb Girdle Muscular Dystrophy is a lifelong condition that gradually gets worse.  I want others to be more compassionate towards those who suffer with chronic pain.  There is no cure for this disease.

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

If my LGMD could be cured tomorrow, I would go to work as a Radiologic Technologist.  I would also go running and biking with my kids and husband.


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