LGMD Sub-Type: LGMD 1B / Laminopathy
At what age were you diagnosed:
I was about 6 months old when they discovered that something was wrong, but it wasn’t until I was about 2 years old that they decided it was muscle dystrophy. I have probably had the disease my whole life. I was 7 years old when I got the diagnosis LGMD 1B.
What were your first symptoms:
I couldn’t hold my head up when I started sitting on my own.
Do you have other family members who have LGMD:
No, I am the only one with LGMD in my family. Both my parents have been tested and the results showed that I didn’t inherit it, it was from a mutation.
What do you find to be the greatest challenges in living with LGMD:
The greatest challenges are that I can’t do anything on my own. I need help with practically everything, like getting dressed, getting in and out of bed, and picking up stuff.
What is your greatest accomplishment:
My greatest accomplishment is my mind. How I have a positive look on everything.
How has LGMD influenced you into becoming the person you are today:
It has made me appreciate the small pleasures and made me a very positive person.
What do you want the world to know about LGMD:
I want the world to know that I am not chained to my wheelchair, the wheelchair is the most helpful aid I have. Without it I would be chained, it is my freedom. When some people see me they only see the wheelchair, the noise around me, and not me. The disease only affects my muscles and not my brain, I am a normal 17-year-old girl.
If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:
I would jump, run up and down the stairs, pick up things, do all the normal things I never have been able to do!