Columns

I met someone who looked ravishing and well put together, with great posture, beautiful hair, and impeccable makeup, and I had my usual thought: “That’s what I would’ve looked like if I didn’t have myasthenia gravis.” But this time, something clicked, and I told myself: “This is not a…

Asking for help has never come naturally to me. I’ve always been the person who is the helper or the one who pushes through and figures it out. Living with myasthenia gravis (MG) has forced me to rethink that instinct, but it hasn’t erased it. I still hesitate. I…

My worst fear happened this week. The antibodies whose presence often helps diagnose myasthenia gravis (MG) disappeared in my latest blood test. My heart felt like it had stopped. Not because I felt better. Not because something changed in my body. But because I was suddenly afraid of losing…

Zilbrysq (zilucoplan) helped ease disease symptoms and improve quality of life for most people with generalized myasthenia gravis (gMG) in an expanded access program (EAP) in France, a study showed. EAPs provide access to experimental therapies, or those already approved but not yet on the market, outside clinical…

There are conversations I’ve had so many times that I can feel my body tense before the first word even leaves my mouth. Living with myasthenia gravis (MG) means carrying a story that most people can’t see, and sometimes the hardest part isn’t the symptoms. It’s the explaining. I…

Note: This column describes the author’s own experiences with Mestinon (pyridostigmine bromide). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I started noticing slight muscle weakness about six months before I began to seriously think that something might be wrong.

While staying at home and resting are a go-to piece of advice when living with myasthenia gravis (MG), I’ve always loved challenging that idea and trying to live life to the fullest. But what are the real limitations imposed by MG? What’s the list of things to never do…

With more than 5,000 square feet of space, incredible exterior grounds, a swimming pool, a cabana, and splendorous decorations — especially at Christmastime — it was a house that couldn’t help but impress. Every room glowed with warmth and light. But on that particular morning, it felt enormously empty. I’d…

Living with myasthenia gravis (MG) means living with questions. Not the big, existential ones, but the small, relentless ones that follow you through your day. Is this an internal trigger or an external one? Is it something I can control, or is it happening no matter what I do?…

Even 26 years after his myasthenia gravis (MG) diagnosis, my twin brother, Aaron, struggles to talk about the effects of his disease. But he is beginning to open up a little more. Recently, he’s begun to talk about the trouble he has with walking. I thought this was…