The Whispered Roar – a Column by Shawna Barnes

What’s that word again? You know, the thing where you can’t remember and your thoughts are fuzzy? Oh yeah! Brain fog. It may be anecdotal, but brain fog seems to be one of those symptoms that crosses the threshold for many autoimmune diseases. Myasthenia gravis (MG) is not…

Rystiggo (rozanolixizumab-noli). Vyvgart (efgartigimod alfa). Soliris (eculizumab). Ultomiris (ravulizumab-cwvz). The one thing these four names have in common is that they’re all relatively new medications to treat myasthenia gravis (MG). The other thing they have in common is that not one of them plays a…

As she celebrates 10 years of marriage, Shawna Barnes reflects on planning a wedding while managing serious health challenges. She shares practical tips for creating a meaningful, low-stress celebration by prioritizing your well-being.

Grief comes to me more often than I care to admit. It doesn’t just come when a loved one passes away. When a person acquires a rare disease like myasthenia gravis (MG) later in life, as I did, grief seems to come in cycles. Usually I try to…

Six years to a tentative diagnosis. Seven years to a confirmed diagnosis. Eight years to thymectomy. Eleven years to find a treatment plan that worked. These are the landmarks of my myasthenia gravis (MG) journey. The starting point was my medical retirement from the U.S. Army…

Note: This column describes the author’s own experiences with prednisone. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. It’s been a year since I started writing about the weight gain I experienced while taking high-dose prednisone to manage…

The song “Build Me Up Buttercup” always plays in my head when someone tells me to “fill your cup.” But how do we fill our cups when we’re too weak to pour from the kettle? This topic has been on my mind lately as I dive into self-care…

Can, or should, you get a massage if you have myasthenia gravis (MG)? Will the use of oils or lotions cause a symptom flare? I see these two questions floating around the interwebs frequently. I’m lucky in that my Veterans Affairs (VA) benefits include this thing called…

Hey, there! How’s the weather by you? Yeah, it’s a scorcher here, too! No, this isn’t just small talk. If you look at forecast maps across the country right now, there are some crazy summer storms brewing. The temperatures have been above average across the nation (at least according to…

The sloth and a snowflake. Why in the world would a person, community, or organization choose those two symbols to represent myasthenia gravis (MG)? Surely there must have been better critters or weather phenomena to represent the one-of-a-kind rare disease that makes us … move … slowly. Huh. Then…