Name:  Nancy

Age: 76

Country: USA

LGMD Sub-Type: LGMD 2C/R5 Gamma Sarcoglycan-related

 

At what age were you diagnosed?

I was misdiagnosed at 25 with polymyositis and was treated with Prednisone for 27 years.  My first accurate diagnosis was in my fifties.

What were your first symptoms?

I can remember being in kindergarten and running across a field and being last. But I really didn’t have much trouble until I moved into a two-story house in college. Climbing the stairs and getting up from the floor became very difficult.

Do you have other family members who have LGMD? 

No, I do not.

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

My problems were very slow to progress.  I had very few challenges during school, even through college.  As I began my teaching career, I had trouble getting up from a seated position, and then had trouble getting up curbs.  It became difficult to lift my legs to drive and fatigue became a problem, but I continued to teach.  I have always been supported by a very loving, caring husband, great children, wonderful family, friends and co-workers, which made it possible to accept my situation.  I first used a cane, walker, and then a power wheelchair.  The challenges were there, but I never felt overwhelmed by them. Also, the slow progression of LGMD made is possible to adjust to the new challenges.  Now I am limited in where I can go.  Traveling is always an adventure.  I have been in a few freight elevators and stuck in a few bathrooms, but at least, I can laugh about that now.

What is your greatest accomplishment? 

I would say just keeping a good attitude. I was able to get married and have boy/girl twins and live a fairly normal life while adjusting to the changes in my life.

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

It has taught me to be positive and have faith that things will turn out for the best.  It always helps to have those people in your life that love and support you.

What do you want the world to know about LGMD?

Yes, it is difficult to navigate, and some days are certainly harder than others, but if you are surrounded by people that stay positive and encourage you, more things can be accomplished than you would think.

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

I would like to help my husband in return for all the years he has cared for me.   I would like to be able to give my family and friends a real hug.  And just for fun, I would like to dance.