Columns

Living with myasthenia gravis (MG) has changed important parts of my life. It has taken things from me that I thought were permanent, such as my physical strength. My previous ability to plan my days with confidence no longer exists. Most difficult of all, MG has made me distrust…

I’ve been in survival mode for so long that I forgot what it felt like to just be. To breathe without panic. To cry without consequence. To feel without falling apart. But over the past couple of months, life gave me no choice but to feel everything. And wow, it’s…

My twin brother, Aaron, was diagnosed with myasthenia gravis (MG) in 1999. He told me that he wants to offer advice and ideas to those newly diagnosed with the condition. There was even less awareness about MG in the late ’90s and early ’00s than there is…

The funniest part about living with a chronic disease like myasthenia gravis is that everyone around you suddenly acts like an expert. They all seem to know a miracle treatment, a secret herb, a magical massage, or a doctor or guru who will surely cure you. I know these…

In the novel “The Lightning Thief,” Rick Riordan writes that “knowing too much of your future is never a good thing.” Five years ago this month, I was diagnosed with myasthenia gravis (MG). Back then, if I could’ve seen the emotional, physical, and psychological toll this illness would have…

This spring has been brutal. The allergy season hit me harder than ever, and it felt like my body was being torn apart from the inside. I always wonder if other people with myasthenia gravis (MG) experience the same kind of flare-up triggers as I do. Last week, I…

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…