Imagine your legs becoming so weak that you can no longer walk. Imagine doing an important presentation and suddenly your voice becomes so hoarse that no one can hear or understand you. Imagine enjoying a mouth-watering steak and discovering your jaw has suddenly become too weak to chew. Imagine you can’t keep your eyes open, only it’s not because you’re sleepy, it’s because the muscles connected to your eyelids can no longer hold them open. Imagine catching a cold and being unable to cough to clear your bronchial tubes of mucus, so you choke, perhaps pass out, maybe even die due to a myasthenic crisis.
That’s Myasthenia Gravis. And for those of us who live it, we Imagine a World Without MG.
What is Myasthenia Gravis (MG)? It’s a rare neuromuscular, autoimmune disorder that causes extreme fatigue and profound muscle weakness. In fact, that’s how it got its name. Myasthenia Gravis is Latin for “grave weakness”. MG can impact a person’s ability to see, swallow, smile, walk, breathe, or engage in normal everyday activities. It’s estimated MG affects anywhere from 14 to 20 individuals per 100,000 people in the general population. In other words, it’s not as common as some other autoimmune disorders and perhaps not as debilitating, but it can significantly impact the quality of life for those affected.
MG occurs when the immune system mistakenly attacks proteins called acetylcholine receptors on muscle cells. These receptors are essential for communication between nerves and muscles. MG symptoms can vary greatly among individuals and can go from mild to severe in a matter of minutes. It can even be life threatening.
A person can be diagnosed with MG at any age, although it’s more common in adults than in children. It typically occurs in women under the age of 40 and men over 60, to any gender and to any race. There are currently over 70,000 people diagnosed with MG in the United States alone.
There is no cure for Myasthenia Gravis, but there are treatments to help manage symptoms. Some people can go into remission, but for many people, MG is a chronic illness. Everyone with MG presents a little differently. Symptoms can fluctuate throughout the day, week, or month and sometimes improve with rest, which makes it very difficult to diagnose. It’s often called the “Snowflake Disease” because symptoms sometimes appear to melt away, only to return later. You may see someone with MG appearing perfectly normal with few or no symptoms and a few minutes later they have trouble talking, walking or even breathing. It’s a progressive disease and symptoms over time may end up getting worse.
I have Myasthenia Gravis. For the most part, I get along pretty well as long as I take my medicine, but the medicine only helps reduce symptoms and sometimes, even on medicine, the symptoms are severe. I have double vision, my eyelids often droop and I frequently become hoarse, especially when I’m tired. Short walks are usually not a problem, but I find myself dragging a foot on longer walks which can easily lead to falls. I can usually handle everyday activities, but often need to rest in the afternoon, or at least take time off my legs in order to make it through the entire day. I usually only eat half of that mouth-watering steak now and save the rest for another day. I’m unable to lift or carry heavy items. Even going to the grocery store can be a chore requiring me to get off my legs after carrying in the groceries. Colds are especially difficult for me and I have to be very careful. Once a cold settles into my bronchial tubes or lungs, I quickly lose the strength to forcefully cough, which can lead to pneumonia. I play with my grandkids when we visit them, but I know when I need to stop and rest.
One of the things that bothers me most about MG is the feeling that I’m ruining things for others. There isn’t any medicine for that. My family have been troopers and very supportive of me, but I still can’t get past the feeling of letting them down because I’m no longer able to do the things I used to do. I see the way they constantly watch me out of the corner of their eye to make sure I don’t overdo it.
I consider myself one of the lucky ones. The medicine currently works for me and rest usually helps reduce my symptoms, but that’s not the case with everyone with MG. Some have difficulty even performing daily tasks like showering, drying their hair, or brushing their teeth. Some require wheelchairs because they’re unable to walk. And some live with the constant fear of a myasthenia crisis where only a ventilator will keep them alive.
Your mind plays huge games with you when you have a chronic illness, so I won’t allow myself to focus on it. Instead, I try to stay active and keep my mind actively engaged doing other things. I also do everything I can to help spread the word about MG because those who have it need your understanding and your help.
If you know of someone who may be displaying signs of Myasthenia Gravis, encourage them to see a doctor as soon as possible. Early detection leads to better outcomes. To learn more about Myasthenia Gravis, go to www.myasthenia.org. If you’re able, consider joining the list of wonderful donors who help contribute toward MG research. Your generosity brings us closer to A World Without MG.
Leave a Reply