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…
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…
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…
Grief’s companion is pain. But in that pain, we can find richness. Holding my mother’s hand as she took her last breath was incredibly painful, but also one of the finest moments of my life. I was able to be with her as she exited this world, just as she…
I’m not the first guy to discover that myasthenia gravis (MG) deserves membership in the select group known as invisible illnesses. Lately, I’ve been thinking about the impact that life with such an illness has on a person’s emotional health. I don’t want to end up in a dismal spot.
It wasn’t my intention to write a column about exhaustion, fatigue, and the part they play in my life with myasthenia gravis (MG). But here’s what happened. I woke up yesterday and went about my usual routine. I ate breakfast, showered, shaved, and dressed. Then I sat at my…
In the years since my myasthenia gravis (MG) diagnosis, I’ve learned to live with certain remarks that, though well-intended, can be hurtful. In conversations with other MG patients, I’ve heard about experiences like mine. No matter what we do — buying groceries, tying our shoes, breathing — someone is…
Since 2020, I’ve been traveling along the myasthenia gravis (MG) road. Sometimes it’s filled with pain, as it was in 2021. We don’t usually think of MG as a physically painful disease. However, the effects of one of the main drugs used to control it, prednisone, can cause…
Chef Marco Pierre White once observed that “a chef’s palate is born out of his childhood, and one thing all chefs have in common is a mother who can cook.” My mother wasn’t fond of cooking, and while she had a palate for only the best food, my dad…
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