LGMD “Spotlight interview”

Name:  Jillena  Age: 32 yrs. old

Country:  United States

LGMD Sub-Type: LGMD2A – a form of Calpainopathy

AT WHAT AGE WERE YOU DIAGNOSED :

I was initially diagnosed with LGMD at the age of 21.  And then, I received genetic confirmation of my LGMD2A subtype a couple months ago.

WHAT WERE YOUR FIRST SYMPTOMS :

After I had my second child, I began to notice that stairs became difficult for me. In fact, I would crawl up them. I had scoliosis so I just attributed my difficulty doing stairs to the scoliosis. But, then, I had my second child and couldn’t get my leg to lift up to a curb easily.  Also, I was always skinny and never knew why. My mom feared something was wrong and convinced me to see a doctor.

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD :

No one else in my family has been diagnosed with LGMD but my mom had a brother who lived with a physical disability.  We believe he had Duchenne Muscular Dystrophy.

WHAT DO YOU FIND TO BE THE GREATEST CHALLENGES IN LIVING WITH LGMD :

The first thing is the struggle my family has to go through that they wouldn’t if I didn’t have this disease. Second, is the  fact that I can’t just go, go, go like I used to. My arms and legs are weaker which makes it exhausting for me to do much.

WHAT IS YOUR GREATEST ACCOMPLISHMENT :

My greatest accomplishment is my most recent change in attitude.   I realized being negative about my disease and my destiny wasn’t helping anyone.  I have not only decided to live life while looking through a different pair of glasses but I’ve also decided to share those glasses with the world through my life journey on a Facebook page I created.

HOW HAS LGMD INFLUENCED YOU INTO BECOMING THE PERSON YOU ARE TODAY :

Once I accepted that I had this disease and I didn’t have to be miserable, I made a page on Facebook.  I just started giving advice on how to be positive. It has since become so much more. I have so many Facebook friends now that have become an awesome support system. In addition, I  have shared my story during a speech for the Shamrock fundraiser for the MDA.  I have blossomed into a person who just wants everyone to see their worth! Ten years ago, I didn’t care about myself – let alone anyone else.

WHAT DO YOU WANT THE WORLD TO KNOW ABOUT LGMD :

I want the world to know that LGMD is an extremely difficult disease to deal with for the most part because it takes away your independence. As you get older, your muscles weaken which decreases mobility. That is hard, especially when you have three kids to run around.

IF YOUR LGMD COULD BE “CURED” TOMORROW, WHAT WOULD BE THE FIRST THING THAT YOU WOULD WANT TO DO :

I would go hiking in the mountains of Colorado with my family!

* * * To read more “LGMD Spotlight Interviews” or to volunteer to be featured in an upcoming interview, please visit our website at https://lgmd-info.org/spotlight-interviews

INDIVIDUAL WITH LGMD: Jillena