Columns

Living with a rare disease is difficult enough, but in the United States, patients fight not only their illness, but also the healthcare system that’s supposed to help them. I was diagnosed with myasthenia gravis (MG) five years ago this month. Managing it requires specialized care, regular…

This is a letter to all those who read and appreciate the work of Bionews, the parent company of this website. Like you, I am a member of the rare disease community, and writing a column about myasthenia gravis (MG) has lightened some of the darker moments of…

I don’t have kids. It’s a decision I don’t regret. However, I come from a large family consisting of nine children, 10 grandchildren, and two great-grandchildren. It was a large household, and with a few exceptions, most of my siblings live relatively close to each other. I was surrounded by…

There’s a French saying I’ve always loved: “croquer la vie à pleines dents,” which literally means “to bite into life with full teeth.” It’s used to describe someone who lives passionately, who devours every moment of joy, adventure, and beauty with intensity. That expression has always defined the way I…

I abhor asking for help. That doesn’t mean I’ve never asked for help in my life, though. Far from it. As a grown man, I pride myself on trying to do the best I can on my own. I like believing in this ideal, but it is far from the…

Before I was diagnosed with myasthenia gravis (MG) in 2019, my symptoms led me to think that my body was lacking vitamins and nutrients. After my diagnosis, I blamed my weight gain on MG, even though hormones played a big role, too. I’ve tried several diets over the years,…

It all started during a regular intravenous immunoglobulin (IVIG) infusion, part of my routine dance with myasthenia gravis (MG). I was mid-infusion when my eyelids started doing the gravity tango and my ability to speak and swallow took a nosedive. Drooping, choking, and that unmistakable MG weakness crept in…

My twin brother, Aaron, was diagnosed with myasthenia gravis (MG) in 1999. It was a moment that changed both his life and my own. Aaron was 24 at the time and worked as a manual laborer but hadn’t decided on a career yet. MG limited what Aaron could do…

Last year, when I started a new job, I was asked to create funny, educational videos. The first topic I tackled was “Celebrities You Didn’t Know Have an Invisible Disability.” And right there, I had this strange realization: I hadn’t been drawn to a…

I’ve seen these questions pop up in myasthenia gravis (MG) forums more times than I can count: “Why do we get weak? Why do we fall?” If you live with MG, you’ve probably asked it, too — sometimes out loud, sometimes in that quiet moment after your tush…