04/29/2015

Name:  Alicia

Age:  38 yrs. old

Country: United States

LGMD Sub-Type: LGMD2A / Calpainopathy

 

At what age were you diagnosed:

I was diagnosed at age 35 after years & years of being misdiagnosed.

What were your first symptoms:

Walking & running on my toes and climbing stairs were the first symptoms.

Do you have other family members who have LGMD:  No

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

One of the biggest challenges for me has been finding physicians who are educated when it comes to LGMD and the challenges & symptoms that come along with the disease.  Many doctors didn’t take my issues seriously (muscle pains, loss in strength, problems walking/stairs) or thought I had an autoimmune disease before I found a doctor that finally sent me to the Mayo Clinic. After an EMG, blood tests & a muscle biopsy I was finally diagnosed but it took many years and many doctors to get where I am at.

What is your greatest accomplishment:

Raising two amazing daughters with my husband of 14years has been an accomplishment and a blessing. Teaching them kindness and to be more empathetic towards people since we never really know the struggles of those around us.

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

It has taught be to be kinder, listen more and laugh every day.  Sometimes all you can do is laugh.

What do you want the world to know about LGMD:

That there are currently no treatments or cure for LGMD and if you have a family member or even a friend who has been diagnosed please educate yourself about the disease.  It could mean the world to someone.

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

Dance all night!