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There is still no cure or treatment for limb girdle muscular dystrophy (LGMD). Seeing all these treatment options for different diseases makes me happy but frustrated at the same time.

I’m frustrated because there are so many of us living with LGMD that are hoping for a cure or at least more treatment options. It’s very tiring and the only option we have is physical therapy. Physical therapy can not cure LGMD, it only helps to slow down the progression and keep us strong for as long as possible.

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The progression for everyone is different. Some of us progress faster or slower than others. I have had LGMD all my life, and I received my first electric wheelchair in the fifth grade. Over the years, I feel like I’ve lost some strength but not too much to the point where I can no longer do anything for myself.

Thankfully, I am still capable of doing quite a bit. Though it would be nice to be able to stand a little longer, not feel tired from doing simple tasks, and have stronger arms so I can lift heavy objects or just be able to hold myself up.

I wish I didn’t need a wheelchair 24/7. I sometimes dread doing certain things because I don’t have the energy and that is a constant source of frustration. For example, getting in and out of bed. Sometimes I almost don’t make it transferring from my bed to my chair because I don’t have the strength capacity or energy. It may take me a couple of times trying and that alone is tiring. It can also be a scary feeling like I’m going to fall and possibly hurt myself.

Before I was completely dependent on a wheelchair, I used a walker. While using a walker, I would walk stooped over because my arms weren’t strong enough to hold myself up. LGMD affects all muscles, especially those in the arms, legs, and trunk area. I also have scoliosis and experience some pain.

I have a lot of questions about finding a cure or treatment options for LGMD. What is the process like for finding a cure? Are there people out there who are actively working to find one? Will there ever be a cure for it?

It’s frustrating to think about these questions because there are a lot of people, like me, waiting for a cure. We do need and want a cure. There are still people who are being diagnosed with LGMD and it would be nice for future generations to not have to suffer as much as I did.

I have learned so much about LGMD throughout the years and I am still learning. Yes, I’m very thankful and blessed that I can do a lot for myself, at least to a certain extent. I hope that a cure is found soon. If there’s no cure, I pray we at least have treatment options other than physical therapy. Who wouldn’t want to feel stronger? Who wouldn’t want to be able to complete simple tasks on their own and not feel tired? 

If there were a cure or treatment it would make me and, I’m sure many others, extremely happy. We deserve a chance to become stronger and more independent while living with this disease.