I can proudly say I have never given up because of my condition. As a child, I kept running everywhere, despite the bruises that never seemed to disappear, and I never stopped exploring, even if I literally collapsed from exhaustion or walked straight into a wall because of diplopia.
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There’s a part of myasthenia gravis (MG) that people rarely talk about, and it’s not the symptoms, the appointments, or the medications. It’s the sheer weight of having to advocate for yourself over and over and over. Advocacy may sound noble, but from an insider perspective, it can…
One of the first things that tends to happen when you stop being physically active is you gain weight. It’s not automatic for everyone, but I know many curvy beauties will relate to this. There are some bodies that seem obsessed about storing fat, as if it would help them…
I like to think of myself as a strong individual. Even before myasthenia gravis (MG) entered my life, I had, like most people, faced my share of challenges: the usual relationship issues, loss of loved ones, and so on. Unlike most, I underwent two years of diagnosis, surgery, and…
The exhaustion that comes from not being believed about the details of my life with myasthenia gravis (MG) isn’t something that announces itself all at once. It settles in slowly, the way a long winter works its way into your bones. Before you know it, you’re carrying a weight…
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…
Recent Posts
- I didn’t achieve my running goal, but training taught me something valuable
- Imaavy now approved in UK as treatment option for generalized MG
- Guest Voice: Finally receiving an MG diagnosis helps me understand life
- Low-dose trazodone found in study to safely ease insomnia in mild MG
- Living with ocular MG and learning how to embrace a more intentional life