04/08/2016 – LGMD “Spotlight Interview”

NAME:  Mary   Age: 46

COUNTRY: United States

LGMD Sub-Type: LGMD2A / Calpainopathy

 

At what age were you diagnosed:

I was diagnosed with LGMD when I was 25 years old.

What were your first symptoms:

My first symptoms were being unable to rise from a seated position without placing weight on my arms for support and difficulty in climbing stairs.

Do you have other family members who have LGMD:

No, I am the only family member to ever be diagnosed with LGMD.

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

The greatest challenges for me are trying to remain independent with daily activities.  The disease progression is slow but not being able to do what you once were able to do is hard to adjust to.

What is your greatest accomplishment:

My greatest accomplishment was marrying my husband. I became a widow in 2014.  He was one of my greatest supporters.  He inspired me to be the best person I could be.  My family and friends are encouraging and a great support.

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

I take nothing for granted.  Each day is a gift – some better than others.  I became more outgoing once my mobility became limited as I still want to experience and be active in life despite my diagnosis.

What do you want the world to know about LGMD:

LGMD is a muscle wasting disease.

Help those you can, become educated and treat everyone respectfully.

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

If a cure was found tomorrow, I would run, dance and jump!  All the things that I can no longer physically do would be top priorities!

 

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