LGMD “SPOTLIGHT INTERVIEW” – 01/07/2016
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!
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