What’s Myasthenia Gravis you ask yourself? Well you’re not alone; Myasthenia Gravis (MG) is a rare neuromuscular, autoimmune disease. It affects the voluntary muscles in your body. It causes slurred speech, blurry or double vision, droopy eye lids, weakness in your arm and leg muscles. MG can also impair your ability to chew, swallow and breathe. Symptoms improve with rest, but return without warning. It can attack a person of any age, race, or sex.
In the past a diagnosis meant certain death, there were no treatments. Today it remains an incurable, but treatable disease. People young and old die as a result of the adverse effects MG has on the body. Because of its rarity diagnosing Myasthenia Gravis can be difficult. There are many physicians who have never seen or treated a person with MG in their practice. Presently only a handful of tests are available. They are limited to electro-diagnostics and laboratory studies. Many of us have been given a diagnosis based on clinical presentation and positive responses to medication, while others endure years waiting for a diagnosis.
For me Myasthenia Gravis Awareness Month is about putting a face to this disease. I live with a disease almost no one has heard of. People often ask “Is it like MS, or ALS?” Or they say things in a well-meaning tone like “but you don’t look sick!” or “so if you take a nap you’ll be alright?” No I don’t always look sick, and a nap will not cure my disease!!
Parkinson’s disease has Michael J. Fox, ALS (Lou Gehrig’s disease) has the ice bucket challenge, and Muscular Dystrophy had Jerry Lewis and a national telethon. There are commercials spreading the word about Alzheimer’s disease, and erectile dysfunction. And my favorite of all is when we turn the world pink for breast cancer! While I am very happy these diseases have a famous face, activity, or color to make people aware, I can’t help but feel anger and despair. Where is MY celebrity, where is MY telethon, why isn’t anyone “Standing Up” for MG, why isn’t the local or national news talking about MY disease! Where is the press when there is an MG Walk? Just once I would love to see something, or someone wearing something Teal for Myasthenia Gravis! Instead of spreading information about ways to look younger, lose weight quicker and have the libido of a rabbit, imagine the information television doctors could share. A monthly segment about a different rare disease would be so educational! Think of the funding and grants that could become available!
During the month of June we bombard social media with pictures, links, and information about Myasthenia Gravis all in the hope that someone somewhere will help us put a face to this disease. For me and many others every day, week, month, and year is about MYASTHNIA GRAVIS AWARENESS…
I am an “Armchair Activist” I blog, tweet, and spread as much information as I can about MY disease…I AM THE FACE OF MYASTHENIA GRAVIS!
If you are interested in learning more visit:
The Myasthenia Gravis Foundation of America
follow #IhaveheardofMG or #stompoutMG
or visit my blog where I share what it’s like to live with Myasthenia Gravis
This post was written by Myasthenia Gravis Health Activist, Rachel. You can connect with her on Twitter.