Age: 24 years old
LGMD Sub-Type: LGMD 2A/R1 calpain 3-related
At what age were you diagnosed?
I was just recently diagnosed at the age of 24.
What were your first symptoms?
Toe walking was my first symptom. I’ve noticed weakness since I was a little girl. I remember in elementary school that when it was my turn to play basketball against the other team it took me forever to get up from the floor to run down to the other side of the court. I was using my hands on my knees to stand up. In middle school, I started avoiding steps because I noticed my legs began to become weaker going up and down stairs. Then all of a sudden, I couldn’t step up a sidewalk/curb. I used to have to pick up my leg with my pants while trying to step up.
Do you have other family members who have LGMD?
I am the only person in my family diagnosed with LGMD.
What do you find to be the greatest challenges in living with LGMD?
The greatest challenges in living with LGMD is keeping my independence as long as I can.
What is your greatest accomplishment?
I recently graduated from Georgia Military College with my Associates Degree in Middle Grades Education. I am now a new transfer student at the best “University of Georgia” majoring in Middle Grades Education. The good news is that I’m pursuing a double major program where I will be graduating with my master’s at the same time as my Bachelor’s! I plan on becoming a Mathematics teacher (favorite subject). Eventually I plan on furthering my career goals a bit further depending on the progression of my MD: as a backup or final option, I plan to become an online college professor where I can stay home majority of the time and teach prerequisites in either English or Mathematics.
How has LGMD influenced you into becoming the person you are today?
Having LGMD has made me very humbled and patient in any situation that I face head on. Plus, I’ve actually learned a lot of cool hacks to accommodate myself when I’m home and away from home especially now at this age and as a young woman in college navigating through this world with MD!
What do you want the world to know about LGMD?
I want the world to know that having LGMD is different from most other disabilities. If we fall, we cannot get up from the ground. With that being said, taking our arm to help us up, doesn’t work for most of us. We literally have to be pulled up by our waist to stand us up until we are able to lock our body in position to stand. And when our body has been overworked, it can take a few days for us to recuperate. Some of the simple tasks that able-bodied people complete, we cannot. We also have to think about it before actually doing that specific task. With this disease we tend to have to check out every place before we go to make sure it is accessible and that we have accommodations.
If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do?
I would want to get up from a low chair because that is one of my biggest struggles with LGMD right now.