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LGMD “SPOTLIGHT INTERVIEW”  – 01/07/2016

NAME: Janet   AGE:  33 yrs. oldLGMD2B - Janet

COUNTRY:  United States

LGMD Sub-Type:   LGMD2B

 

AT WHAT AGE WERE YOU DIAGNOSED:

I was originally misdiagnosed with Polymyositis at the age of 17.   Years later at the age of 28, I was diagnosed with LGMD2B.

WHAT WERE YOUR FIRST SYMPTOMS:

I started having difficulty climbing stairs, running, dancing and unable to play soccer as well as any other sports.

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD:

There is no family history of LGMD until me.

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

Losing my independence has been very difficult. I am no longer able to walk long distances. I now need a power chair to move around. I am unable to independently care for my two children, 2 years old and 3 months old. I need someone to assist me in taking care of them.

WHAT IS YOUR GREATEST ACCOMPLISHMENT:

My greatest accomplishment has been accepting my disease. I mentally prepared myself for my transition to a power chair, where now things can be a little easier when I’m outside my home.

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

I have become a much stronger person. Despite the obstacles that come along with my condition, life goes on and I have and will make the best of it for myself and for my family.

WHAT DO YOU WANT THE WORLD TO KNOW ABOUT LGMD:

It’s a rare disease, but it is out there and it’s important to raise awareness that can help find treatments and a cure.

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

I would run towards my kids and lift them up into the air!

 

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

Janet
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