Columns

What I wish for in a patient-provider relationship

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…

3 ways I manage PTSD as someone with MG

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.

Praying that I never lose courage

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…

Why fix what’s not broken in my treatments for MG?

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…

Myasthenia gravis does not make us powerless

As a historian and teacher, I often make connections between current events and the past. Because I also live with myasthenia gravis (MG), recent events called to mind a connection between the past and MG. In June, the Titan submersible imploded, resulting in the deaths of all five…