The Whispered Roar
— Shawna Barnes

People tend to take certain abilities for granted, refusing help even if the need arises. Call it pride, embarrassment, stubbornness, or denial, but the result is the same: Some tasks may not get done if…

Do you ever just sit there, staring into space, wondering which diagnosis you can attribute your latest symptom to? Maybe you don’t even bring up new issues with your doctor, simply chalking them up…

“That spot is saved for someone who really needs it, someone living with a disability.” You can unclench your fists and stop gritting your teeth now. If, like me, you’re a young(er) person with…

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…

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…

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…

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…

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,…

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)…

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…

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…

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…