The Whispered Roar
— Shawna Barnes

Doctor to patient: “I went to medical school. I think I know what I’m doing and what is best.” Patient to doctor: “My [arbitrary number of years] living with [rare disease] trump the 15 minutes you spent learning about…

Post-traumatic stress disorder (PTSD) is one of those taboo topics many people don’t seem to want to talk about. Good thing I’m not like most folks. I have PTSD from my time in the U.S. Army as a result…

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…

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…

Daisies and strawberry shortcake. Blue tartan and outdoor seating. Home and a new name. On Aug. 10, my husband, Justin, and I will celebrate 10 years of marriage. Our wedding day was amazing, thanks to the many careful…

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…

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.

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…

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…

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…

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…

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…