June marks the annual “MG Awareness Month,” a nationwide movement created by the Myasthenia Gravis Foundation of America, Inc. (MGFA) to raise awareness of the often misunderstood and under-diagnosed disease, Myasthenia Gravis (MG). MG strikes people of all ages, races, and genders and, while treatments are available to improve muscle strength, there is no known cure.
As I wrote a few weeks ago I was diagnosed with MG in April. I am extraordinarily lucky because my case was rather a mild one. I’d managed to do a pretty good job of hiding the virtual paralysis of my left hand for more than six years, and I am responding well to treatment. I have regained some of my hand functions and I’m progressing at a decent pace.
There are some…I hesitate to use the word “struggles,” but complications from the various medicines that I’m taking to deal with this. Prednisone, a common steroid, made me hyper for a few days, and seems to have taken its toll on my patience and attention span. Some days it’s really hard to concentrate enough to write this blog. I am on a new med as of last week, an immuno-suppresant, that is supposed to act as “Prednisone Helper” and eventually replace the steroid.
Before that happens, I will likely require cataract surgery. Prednisone is basically like Purina Cataract Chow, and the tiny cataracts I had six weeks ago seem to be well-fed and growing rapidly. This is routine eye surgery and I’m not worried at all about going through it. One expected side effect of Prednisone has yet to materialize. After a month on the drug, my blood sugar has remained stable and I actually lost weight, instead of gaining the normal ten-to-fifteen pounds.
So I’m actually doing quite well, as you can see in the photo to the left. In many ways I feel better than I have in years. I’m not really typical of your average person with MG, which is usually a much worse disease than what I have been dealing with for at least the last eleven years. The fact that it took eleven years to figure out what was going on with my body is a sign that this disease is probably not quite as uncommon as it seems. People with very mild cases (like mine) may simply ignore and adapt to life without the full use of their appendages. A lot of folks chalk it up to simply getting weaker as they get older.
I have handled the meds better than most people. I do have to be careful around sick people and probably shouldn’t visit anyone in the hospital. With my immune system deliberately being suppressed, I am at a greater risk for communicable diseases. I also can’t get a Flu shot, a fact which I must admit, I find to be delightful. You take your silver linings where you can.
Since June is MG Awareness Month, I am going to devote a few paragraphs to information that I swiped wholesale from more knowledgable sources, like the aforementioned Myasthenia Gravis Foundation of America. I figure it’s the least I can do since I’m a member of the club now.
Myasthenia gravis means “grave muscle weakness.” MG is an autoimmune neuromuscular disease that affects voluntary muscles. Symptoms include weakness in muscles that control eye movements and eyelids, chewing, swallowing, coughing, facial expressions, arm and leg movements, and breathing.
The prevalence of MG is thought to be much higher than the approximate 70,000 affected by the condition in the United States. As a rare disease, it is frequently under-diagnosed because many of its symptoms are similar to those of other disorders.
The June Awareness campaign is a call to action to patients, the medical community and advocates to come together to increase awareness of MG and help to eradicate MG. The goals of this campaign are to promote an understanding of the scope of this disease, and to further MGFA’s mission of facilitating the timely diagnosis and optimal care of individuals affected by MG and closely related disorders and improve their lives through programs of patient services, public information, medical research, professional education, advocacy, and patient care.
A key priority for MGFA is to raise funds for research to find a cure and improve treatments for those with this disease. There is much that can be done, but still much to understand. New drugs to improve treatments are needed. Research plays an important role in finding new answers and treatments for MG.
About The Myasthenia Gravis Foundation of America
Founded in 1952, the Myasthenia Gravis Foundation of America (MGFA) is the only national volunteer health agency dedicated solely to the fight against the debilitating disease, myasthenia gravis. MGFA is committed to finding a cure for myasthenia gravis and closely related diseases, improving treatment options and providing information and support to people with myasthenia gravis through research, education, community programs, and advocacy. MGFA has 20 chapters in the United States serving patients, their families and caregivers through support groups and educational programs.
For more information, please visit the MGFA website or call 800/541-5454.
That’s it for this week’s PopCulteer. While I’m doing quite well, I am dealing with some pretty heavy stuff, but I’ve still managed to keep PopCult updated with at least one post per day. So check back. There’ll be something new every day, and I’m really trying to get back in the swing of things and have all our regular features up and running soon.