LGMD “Spotlight Interview”

Name:  Anne   Age:  56 yrs. old  

Country:  United States

LGMD Sub-Type:  LGMD2A – also known as Calpainopathy

At what age were you diagnosed:

For having Muscular Dystrophy, I was diagnosed around 4 years of age. The specific 2A diagnosis didn’t happen until a DNA test at the age of 46.

What were your first symptoms:

My first symptom was that I walked on my toes and a “gut” feeling that my mom got that things just weren’t right.

Do you have other family members who have LGMD:

No, I am the only person in my family.

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

I find it challenging to stay a part of society. Not being able to get into other people’s houses, jump in the car and go or easily fly to other places makes me feel left out. As I struggle to get dressed and then hear about all the wonderful things that my friends and family do, it is discouraging. I want to be included in people’s lives and not just be always just watching from the sidelines.

What is your greatest accomplishment:

I feel proud of the fact that I graduated from college and had a successful career. Navigating the corporate world and competing for new positions was difficult, but I was able to do it! Although I am no longer able to work, knowing that I was able to succeed while my body deteriorated makes me feel good.

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

I think that having LGMD has taught me to prioritize. Not just tasks, but for the quality of life things. I have limited energy and have learned to spend it on things that make sense for the big picture. Dirty dishes in the sink are not as important as spending time with my husband or a friend.

I also believe that having my own struggles has helped me to be more compassionate to others who are struggling.

What do you want the world to know about LGMD:

I would like them to know how debilitating it is and that it is something that can be cured!  With contributions toward research, others can help us to cure this disease.

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

I would RUN to my husband and give him a huge hug!

 

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