Living with LGMD: My Story

I have Limb-Girdle Muscular Dystrophy (MD); I was diagnosed at the age 24. I was born and raised in Cambridge, MA and went to high school in Cambridge. I received my bachelor’s degree in Fashion Design and Merchandising and then furthered my education in getting my Master’s degree in Business. When I first discovered my symptoms of my MD, it was crazy to me because I started to get symptoms around 2009. While in graduate school I began to repeatedly fall, and my leg would just give out on me without notice. I would fall to the ground and not be able to pick myself back up, I would need assistance from someone to lift me up with all their might, because it was something I just wasn’t capable of doing on my own. I also began notice when I tried to reach for certain things in the kitchen cabinets or try to exercise I was unable to lift my right arm up all the way. I kind of just thought to myself maybe I need to go on a diet and lose weight, but in the back of my mind I knew it something more.

So I went to see an orthopedic, but I was told that this was more of a neuro-muscular issue, so I then went to see a Neurologist. Once I saw the Neurologist, she then tested me and gave me muscle biopsy, MRI, an EMG and every other test you can think of. So after multiple tests, I was finally diagnosed with Limb-Girdle Muscular Dystrophy. Limb-Girdle is a form of MD that affects the limb of the shoulders all the way down to the legs, which progressively over time eventually 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 so I started doing some research on it and read what eating healthy and exercising would help. I joined weight watchers with my cousin and I lost over 36 pounds and I felt great. I’ve able to keep half the weight still off, and I am still determined to lose more.

They have multiple types of Limb-Girdle Muscular Dystrophy, and 5 years later my doctor’s are still trying to figure which type I have exactly. The only thing they know at this point is from the types I may have can affect my heart which is why I often have to go get a echo-cardiogram test that tests my heart to make sure everything is ok.

Living with Limb-Girdle Muscular dystrophy is still new to me every day. I wake up every day not knowing how my legs are going to feel or what pain I may have when leaving my house. I try to be very careful when walking because I don’t want to fall, because I won’t be able to pick myself back up. Although I am on my feet a lot for work, after a certain amount of hours, my legs start to weaken. I am currently a visual merchandiser at different locations 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 and my part in the fashion industry.

I have the wonderful support from my family and friends but at the ending of the day, they have NO IDEA what I go through on daily basis or what I’m feeling. I try to explain to them how my legs feel, but it’s just so hard to explain. I still go out and enjoy my life as normal, but sometimes I always have certain things in the back of my mind.

When going out I find myself researching about where I am going first, like does this place have stairs?, does it have an elevator?, do they accommodate handicap people? So all of these things I worry about when I go out and my friends and family have no idea. Living with MD has made me realize how strong I am and knowing I have no choice but to deal with this. I sometimes get stares because people wonder what a young girl like me is doing either walking with a limp, with a cane, or parking in a handicap parking spot. But I don’t mind because they just don’t know me or know what I have. Although my MD has progressed over the years and getting worse, I have learned to except it and make certain changes in to my life such as now walking with a cane in order to keep my balance and helping me not to fall. At this point I am just taking everything day by day and staying strong. But there is one thing I want people to know by reading this quote.

"There’s no “cure” or a pill will “fix it”, but at one point I thought it may help. And I thought the same with therapy and food. But it’s my endless support from family and friend that helps. It is hardest thing that I have ever done, and I found myself much stronger for doing it. Never, ever underestimate the power of your desire. If you want to live badly enough, you can live. The greater question, at least for me was: How do I decide I want to live? That is the question I’m still working on?"