What I Want People to Know About Living With Limb-Girdle Muscular Dystrophy
I have limb-girdle muscular dystrophy (MD); I was diagnosed at age 24. I started to get symptoms around 2009. While in graduate school for fashion design and merchandising, I began to fall repeatedly; my leg would just give out on me without notice. I wasn’t able to pick myself back up; I would need assistance from someone to lift me up with all their might. I also began to notice that I was unable to lift my right arm up all the way when I tried to reach for certain things in the kitchen cabinets, or exercise. At first I thought maybe I needed to go on a diet and lose weight, but in the back of my mind I knew it was something more.
First I went to see an orthopedist, but was referred to a neurologist. The neurologist gave me a muscle biopsy, MRI, EMG and other tests. I was finally diagnosed with limb-girdle muscular dystrophy. Limb-girdle is a form of MD that affects the limbs from the shoulders all the way down to the legs, and it progressively gets worse.
The first thing I thought was how long am I going to live? Will I be in a wheelchair soon, and what is my life going to be like from now on? I knew I had to be strong and continue to do what I have to do. To feel healthier, I joined Weight Watchers with my cousin and lost over 36 pounds. I’ve been able to keep half the weight off, and I am still determined to lose more.
There are multiple types of limb-girdle muscular dystrophy, and five years later my doctors are still trying to figure out which type I have. They do know that the types I may have can affect my heart, so I get regular echocardiograms to make sure everything is OK.
Living with limb-girdle muscular dystrophy is still new to me. I wake up every day not knowing how my legs are going to feel or how much pain I may have. I try to be very careful when walking because if I fall, I won’t be able to pick myself back up. Although I am on my feet a lot for work, after a certain number of hours, my legs start to weaken. I am currently a visual merchandiser for a very popular clothing store. I enjoy my job because it keeps me and my legs active, and I enjoy traveling to the different store locations and doing what I love in the fashion industry.
I have the wonderful support of my family and friends, but at the end of the day, they have little idea what I go through on a daily basis. I try to explain to them how my legs feel, but it’s hard. I still go out and enjoy my life, but I always have certain things in the back of my mind. When going out I find myself researching where I am going first, asking does this place have stairs? Does it have an elevator? My friends and family have no idea I must think about these things.
Living with MD has made me realize how strong I am. I sometimes get stares because people wonder what a young girl like me is doing walking with a limp, with a cane, or parking in a disabled parking spot. But I don’t mind, because they just don’t know me. Although my MD has progressed over the years, I have learned to accept it and make certain changes to my life, such as walking with a cane to keep my balance. At this point I am just taking everything day by day and staying strong. But there is one thing I want people to know.
There’s no cure or pill to “fix” my muscular dystrophy. But the endless support from family and friends helps. Living with MD is the hardest thing that I have ever done, and I consider myself much stronger for doing it. Never, ever underestimate the power of your desire. I believe if you want to live badly enough, you can live. The greater question, at least for me was: How do I decide the way I want to live? That is the question I’m still working on answering.
The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.