Columns

On many weekends when I was a kid, my parents would take the family to the Boston Public Garden. We loved the iconic “Make Way for Ducklings” statues, inspired by the children’s book of the same name. During good weather, the gardens would fill with color, and no child could…

“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 myasthenia gravis (MG) and utilize accessible parking spots, you’ve likely heard the above quote, or…

The short story “Rip van Winkle,” written by Washington Irving and published in 1819, ranks among the classics of American literature. It tells the tale of a man living in colonial America who fell asleep a subject of King George III and woke up a citizen in the newly…

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 it in class. I think I know my body and what…

Many kids hate the end of summer, which brings a return to school. I was never one of those kids. I’ve been a nerd since kindergarten. I loved — and still do — the start of the new school year. The scent of newly waxed floors and the sight of…

The exceptionally hot summer weather in Texas, where I live, has made life for unhoused people more difficult than usual. It’s troubling to see so many people standing outside in the heat at stoplights or camping under overpasses. Two weeks ago, I broke free from the record high temperatures…

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 of combat, surviving assault, and a sprinkling of medical trauma.

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…

The limitations and frustrations that accompany life with myasthenia gravis (MG) have dominated my thinking the past few weeks. I wish I could say I’ve gleaned inspiration from the experience, but I can’t. It’s one of those times when MG has taken from me and failed to give anything…

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…