COUNTRY: United States
LGMD Sub-Type: LGMD2A / Calpainopathy
AT WHAT AGE WERE YOU DIAGNOSED:
I was diagnosed with MD when I was 12 years old.
WHAT WERE YOUR FIRST SYMPTOMS:
First symptoms were toe walking, arms not going straight, limping gait, and not gaining weight.
DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD:
No one in my family has Muscular Dystrophy or LGMD.
What do you find to be the greatest challenges in living with LGMD:
The greatest challenge is not being able to do certain things such as Walking, Running, Getting out of bed on my own, Bathing on my own, Cooking dinner, Playing with my nephew on the floor. Everything I do is a challenge.
WHAT IS YOUR GREATEST ACCOMPLISHMENT:
Greatest accomplishment would be getting married to a wonderful man and hopefully soon starting a family, also when I got my power chair and was able to cook dinner for the first time in 2 years, and being able to go outside with my husband.
HOW HAS LGMD INFLUENCED YOU INTO BECOMING THE PERSON YOU ARE TODAY:
It has made me realize that even though I am limited on things I can do, with the right tools I can still do some of those things just in a different way.
WHAT DO YOU WANT THE WORLD TO KNOW ABOUT LGMD:
Educate yourself on LGMD and some of the struggles people go through. Don’t judge someone on how they look. Every form of MD has a different look but that doesn’t make the person. their personality makes the person. If you see someone struggling whether in a wheelchair or walking offer to help, I know for me when someone asks if they can help me I am very grateful for it.
IF YOUR LGMD COULD BE “CURED” TOMORROW, WHAT WOULD BE THE FIRST THING THAT YOU WOULD WANT TO DO:
I would run as fast as I can down the road and around the block, I would jump up and down and maybe even do flips. I dream of the day I can do this.