When I was a kid, still waiting for my diagnosis, I remember overhearing doctors say, “It might be an orphan disease,” “It could be rare,” “This might be a special condition.” At that time, and even shortly after my diagnosis, I didn’t understand what they meant. I was confident…
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…
Note: This column describes the author’s own experiences with intravenous immunoglobulin. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Let’s be real: Living with myasthenia gravis (MG) can be a roller coaster. One day, you’re hunky-dory-peachy-keen, and the…
“It’s the things that are left unsaid that take up the most space in our hearts.” I don’t know who wrote that, but it reminded me about how much has been left unsaid between my twin brother, Aaron, and me. Aaron’s myasthenia gravis (MG) diagnosis in 1999, at the…
Here we are again: I have new symptoms. And no, I am not excited about seeing more doctors. After spending 10 years searching for a diagnosis before finally finding out I have myasthenia gravis, I now limit my medical appointments to only the most urgent and important ones.
Listen up, my fellow seronegative warriors. This is your wake-up call. I know the fight you’re in with myasthenia gravis (MG) because I’m in it, too. You’ve been poked, prodded, and told, “But your tests are normal.” You’ve seen the raised eyebrows, felt the silent doubts, and…
In the Irish writer Oscar Wilde’s play “The Importance of Being Earnest” (1895), he writes that memory “is the diary that we all carry about with us.” Still, our memories can’t always be trusted; some scientific research even suggests that our memories can be unreliable. Emotions, voluntary…
Whether it’s a work meeting, family gathering, or friendly meetup, I always feel the need to mention that I might have to cancel due to my chronic illness. But most people don’t seem to fully understand this. I remember watching a discussion on French TV where a woman said something…
1 Kings 19 tells the story of the prophet Elijah’s search to encounter God. Elijah looks for God in a great and powerful wind, an earthquake, and a fire, but has no success until he hears a “gentle whisper.” It turns out that God’s presence is quiet and…
Living with myasthenia gravis (MG) can feel like riding an unpredictable roller coaster. Some days, we coast along smoothly, while on others, it’s like the track was built by a mischievous toddler with a love for loops. With fluctuating muscle strength and fatigue, learning to love and care for…
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