LGMD “SPOTLIGHT INTERVIEW”

Name:  Fred   Age: 36 yrs. old

Country: United States

LGMD Sub-Type:  LGMD2A  / Calpainopathy

 

At what age were you diagnosed:

I was diagnosed at the age of 13.

What were your first symptoms:

Looking back I was always slightly slower than the other kids but I can’t say there was one symptom which my parents or I noticed.  I was diagnosed on a fluke. I had gone skiing with a church group and ultimately broke my leg.  When I went to the hospital emergency room for my broken leg, a Dr noticed that I was not as strong as I should have been at that age.  That resulted in a muscle biopsy.  Initially, I was diagnosed with Becker’s MD, this was all pre-DNA testing.

Do you have other family members who have LGMD:

No, I’m the only one.

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

The greatest challenge for me is not being able to hold my 7-month old without assistance. Constantly having to advocate for me as it pertains to this condition.  I never noticed how many people have “ableist” attitudes. The last for me would be not being able to freely visit friends and family.

What is your greatest accomplishment:

I have so many accomplishments, but if I could only choose one I’d say working my way off of SSI. After my diagnosis, I had given up hope of ever having a job, a car, a home, a family of my own etc. Today, I am a state police dispatcher, I drive, I have a beautiful family, I’m currently looking to purchase my first home, and I’m optimistic that when the time comes and I no longer can physically do the job I have that God will provide another opportunity.

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

LGMD has taught me how to fight for what I want.  It’s taught me that I’m never as limited as I may think.  Anything is possible.

What do you want the world to know about LGMD:

That LGMD has not been cured yet but, with their help, it can be.

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

Pick my little boy up, give him a tight hug, toss him up in the air and catch him.

 

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