At a time when there is a pandemic going on and the US is dealing with protests and riots because of the murder of George Floyd, posting this seems almost irrelevant, but it’s something my family has dealt and lived with for years, and I will continue to post this every June.
June is Myasthenia Gravis Awareness Month.
What is Myasthenia Gravis (MG)?
A not too well known autoimmune neuromuscular disorder that usually takes 1-2 years to diagnose, it’s also called the snowflake disease because every case is different. It usually starts with a routine infection, like the cold or the flu, and then myasthenic symptoms start to appear, but are often misdiagnosed. It isn’t a genetic disorder, making it possible for anyone to develop it.
Generally, MG involves muscle weakness. This can be localized to certain parts of the body, such as in ocular MG where only the eyes are affected, or generalized to all parts of the body. It usually doesn’t result in death, unless someone enters myasthenic crisis and doesn’t receive medical help right away, but does tend to limit the amount of activity someone can do. The more exertion, the more tired an MG patient becomes. It can be devastating to individuals and families when their loved one is no longer able to do the things they were once able to.
For more information, check out: http://www.myasthenia.org/
Why is this important? And why do I even know about it and spread awareness?
My mom was diagnosed with this over 10 years ago. At the time, she was the mother of two adolescents and one pre-adolescent. It wasn’t an easy time, and finding our mother asleep on the couch in the middle of the day because she was just so exhausted was hard for us. I was, and still am, very close to my mom and was old enough to realize something was wrong. Her symptoms came and went over a couple of years, making it difficult for doctors to diagnose her.
It took almost 2 years for her to be properly diagnosed. Two years of useless treatments, countless doctor appointments, and dietary changes that didn’t help. There were periods when she was better and periods when she was too tired to do anything. It was hard on us as a family. We didn’t know what was going on, didn’t know what MG was, didn’t know if Mom was going to be okay.
I’m happy to say that, more than 10 years later, my mom is very stable. Due to dietary changes that just happened to work in her case and the proper medication, she hardly feels the effects of MG most days and lives a relatively normal life. She is now gluten-free and a shot of tequila (it’s the agave that does it) every afternoon helps her feel almost normal.
Even now, years after MG entered our family, it isn’t a well-known disorder. I’ve only met one other person who has ever met someone with it. People who have it are routinely misdiagnosed or even ignored. There is a blood test and a muscle test that can tell whether or not someone has it, but most doctors don’t know this disorder, which makes diagnosis difficult. My mom got lucky that her doctor knew of a specialist who had another patient with MG. Otherwise it could have taken many more years before she was properly diagnosed.
So, wear teal and spread the word, because most people just don’t know what Myasthenia Gravis is.