LGMD “Spotlight Interview”
LGMD Sub-Type: LGMD2B
AT WHAT AGE WERE YOU DIAGNOSED:
I was diagnosed in 2009 at the age of 27.
WHAT WERE YOUR FIRST SYMPTOMS:
My first symptoms were difficulty walking up steps, getting up from the ground or getting up from a seat/toilet.
DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD:
No other family members have LGMD.
WHAT DO YOU FIND TO BE THE GREATEST CHALLENGES IN LIVING WITH LGMD:
The biggest challenge for me is the mental part of understanding my limitations. Knowing that my life is not the way I had ever imagined it would be. Knowing the things my husband and I had to change in order to cope and deal with this continuously progressing disease.
WHAT IS YOUR GREATEST ACCOMPLISHMENT:
I think my greatest accomplishment after being diagnosed with this disease is my marriage. We got married 2 months before I started having all of the tests to determine what was wrong. In sickness and in health came a lot sooner than we could have ever imagined, but we are stronger today because of it.
HOW HAS LGMD INFLUENCED YOU INTO BECOMING THE PERSON YOU ARE TODAY:
This disease is life-changing. Despite how dependent I am on my family and friends I am still fairly independent. I drive with hand controls, I am resourceful in the ways that I find to keep doing things for myself, and in a way, even though my muscles are weaker, I am stronger. This didn’t happen all at once. It took time to realize that I am a strong person even though my muscles are weak.
WHAT DO YOU WANT THE WORLD TO KNOW ABOUT LGMD:
I want the world to know and understand that this disease is so challenging. Sometimes my brain doesn’t remember that I can’t do something and I will just start to do it only to realize I can’t. I want them to know that from the moment someone with LGMD wakes up they have to immediately think about how they are going to tackle the day. The world should know that this disease, while somewhat invisible, is real and is extremely difficult to deal with. That just because someone is out and about with this disease does not mean that they are OK or cured. We still have to live our lives, even if behind our smile we are exhausted or hurting. The world should also know that THERE WILL BE A CURE. There are so many people working on this and the strides made in just the few short years I’ve been diagnosed have been huge.
IF YOUR LGMD COULD BE “CURED” TOMORROW, WHAT WOULD BE THE FIRST THING THAT YOU WOULD WANT TO DO:
This list is LONG….but first I would run. My legs haven’t moved that way in such a long time.
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