LGMD “Spotlight Interview”

NAME:  Denise                                  AGE: 49

COUNTRY: New Zealand

LGMD SUB-TYPE: LGMD 2A/R1 Calpain3-related

AT WHAT AGE WERE YOU DIAGNOSED:

 I was diagnosed with LGMD when I was 18 years and received a confirmed diagnosis of LGMD 2A/R1 when I was 39 years old.

WHAT WERE YOUR FIRST SYMPTOMS:

My initial symptoms were difficulty with running and climbing stairs.

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD:

No, I am the only family member with LGMD.

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

My greatest challenges have been losing arm strength, having choices taken away and the loss of independence, and needing to rely on others for basic functions.

WHAT IS YOUR GREATEST ACCOMPLISHMENT:

My greatest accomplishment is having two beautiful daughters (20 & 16).

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

I am living a full life despite this condition. I continue to work full time, travel and do as much as I can. I try not to let this condition affect the things I want to achieve in life. There is always a way if you are determined enough.

WHAT DO YOU WANT THE WORLD TO KNOW ABOUT LGMD:

LGMD is a progressive and debilitating disease that robs you of your basic human functions. People with this condition are incredibly strong in the face of unbelievable challenges.

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

If my LGMD was cured tomorrow, I would swim at the beach!

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