The Whispered Roar
— Shawna Barnes

The past 12 months have been eye-opening for me, bringing opportunities to accept hard truths about my mortality and independence while living with myasthenia gravis (MG). Both of my husband’s parents passed…

The first time I heard those dreaded words, “You have myasthenia gravis” (MG), I felt such relief. That was quickly followed by an intense desire to learn everything I could about the condition.

“Is there anything I need to know to help you in an emergency situation? What does an emergency look like for you?” A client of mine recently asked me those questions as we chatted…

It’s crazy to think that I’m approaching my 30th month of writing my column, “The Whispered Roar,” for Myasthenia Gravis News, as well as my seventh year of raising awareness for…

Because of myasthenia gravis (MG), not only do I have to keep track of the food I eat, the amount I talk, and the schedule for my treatment plan, but I also…

As you watch the scene unfold, you see someone standing before a person who’s seated. The person who’s standing swings a pocket watch in front of the other, whose eyes are closed, and chants,…

When explaining myasthenia gravis (MG) to someone, I often describe it as a “fickle [expletive].” With MG, there seems to be no rhyme or reason for anything. At the start of my…

If you’ve been recently diagnosed with myasthenia gravis (MG) and you’re looking for a website to help you understand what that means, including how to explain to family members what your life is…

I admit it. I’m a nerd. I like the science gobbledygook. I thoroughly enjoy digging into the PubMed catalog of biomedical articles, part of the National Center for Biotechnology Information. But even…

“Disabled.” It’s a word with many meanings that trigger a gamut of feelings. Myasthenia gravis (MG) is considered a rare and disabling disease. It qualifies those of us who have it to collect…

Makeup is one of those things that we women use to “put our face on,” so to speak. But when we start having trouble holding our arms up due to myasthenia gravis…

For the first time in a long time, I was frustrated with care that I had received. I recently had to go to a hospital emergency room, where, unfortunately, I didn’t feel that I…