I was diagnosed with Limb-Girdle Muscular Dystrophy (MD) at the age of 24. Born, raised, and educated in Cambridge, MA, I received a bachelor’s degree in Fashion Design and Merchandising and a Master’s degree in Business.
I first started experiencing strange symptoms around 2009. While in graduate school my leg would just give out on me without notice and I began to repeatedly fall and would need assistance to get back up. Around this time I also began to 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 was something more.
So that is when I started to seek medical advice. I first went to an orthopedic surgeon, but I was told that this was more of a neuro-muscular issue. That led me to a neurologist who ran a battery of tests – a muscle biopsy, MRI, EMG and every other test you can think of. After all of these tests, I was finally diagnosed with Limb-Girdle Muscular Dystrophy. I was told 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.
Questions raced through my mind. How long am I going to live? Will I be in a wheelchair soon? What is my life going to be like from now on? But through all these years – through the physical and emotional challenges – through a disease that has progressed to a point where I am dependent on a wheelchair – I have realized how strong I am. I have learned to accept these challenges and make certain changes in my life that help me to keep reaching my goals. That includes flourishing in my career. At the present time, I am working as a Merchandise Coordinator within the Boston Area. I also own my own t-shirt line business called Girls Chronically Rock – inspired by my battle with MD and my desire to make something inspirational and motivating for people who may have a chronic illness or are battling some other challenge in their life. I wanted to let them know that they rock no matter what.
There are multiple types of Limb-Girdle Muscular Dystrophy but unfortunately – after all these years – the doctors have not been able to determine what type I have yet. But I remain hopeful. I’m hoping that one day there is a cure or treatment that helps me lift up a glass like I used to, to go back to standing up like I used to, or even be able to drive again, that would be so awesome.
In the end, it’s been the endless support from family and friends that has also kept me going. Living with Limb-Girdle Muscular Dystrophy is the hardest thing that I have ever done, but I have found myself much stronger for doing it. Never, ever underestimate the power of your desire. If you want to live badly enough, you can liv
Keisha Greaves – living with Lymph Girdle Muscular Dystrophy
