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1 week ago | 
myastheniagravisnews.com | Shawna Barnes |Patricia Inacio |Allen Francis
“I’m watching you, Wazowski. Always watching.”If you’re a cartoon fiend like I am, you likely recognize that quote from “Monsters, Inc.,” said by Roz, an administrator. Roz has a gravelly, smoky rasp of a voice. I’ve used this character as an example of what I sound like when my vocal cords have decided they’ve had enough. While attending my cousin’s wedding recently, I finally had an epiphany of how to describe what it feels like — not just what I sound like.
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3 weeks ago | 
myastheniagravisnews.com | Mark Harrington |Shawna Barnes
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 had been with me as I entered it. It was sublime.
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3 weeks ago | 
myastheniagravisnews.com | Allen Francis |Margarida Maia |Sarah Bendiff |Shawna Barnes
Yoga expert Vanda Scaravelli once said, “Movement is the song of the body.” Every person has a rhythm when they walk, move, or use mannerisms to communicate. Since my twin brother, Aaron, was diagnosed with myasthenia gravis (MG) in 1999 at 24 years old, his rhythms have looked a little different. I’m still learning about Aaron’s MG because, for many years, we left much unsaid. Aaron dealt with the stares his severe eye misalignment got by including sunglasses in his daily wardrobe.
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4 weeks ago | 
myastheniagravisnews.com | Sarah Bendiff |Mark Harrington |Shawna Barnes |Allen Francis
I discovered my love of cooking when I was 12. While I enjoyed every part of my learning journey, my mom didn’t fully trust me in her kitchen, so I didn’t get to cook very often. I still live with her, so cooking for me is a rare occasion, which means that when she finally allows me to take over, I get a little too excited. Unfortunately, myasthenia gravis (MG) likes to remind me that things will never be as easy as they used to be.
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1 month ago | 
myastheniagravisnews.com | Allen Francis |Steve Bryson |Mark Harrington |Shawna Barnes
I started traveling as a backpacker when I was 19 years old, back in the 1990s. I spent a semester studying in London in 1997. As a naive kid from the South Bronx in New York City, I found it mind-blowing to be in countries where people spoke English but had such heavy accents that I couldn’t understand them. I was also a lot more outgoing back then; I’d go out of my way to say hello to strangers and try to strike up spontaneous conversations.
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1 month ago | 
myastheniagravisnews.com | Sarah Bendiff |Andrea Lobo |Esteban Cerezo |Shawna Barnes
Seventeen years of living with myasthenia gravis (MG) has made me a pro at navigating daily life. I’ve learned how to handle both routine tasks and high-pressure days because being sick doesn’t mean I get to sit out on life. Over the years, I’ve worked on big projects, organized events, and fought hard for my education. Through all of it, I’ve picked up some solid survival strategies to help me keep going, even when MG tries to slow me down. I admit that I’m easily excited.
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1 month ago | 
myastheniagravisnews.com | Shawna Barnes |Lindsey Shapiro |Sarah Bendiff |Mark Harrington
Living with myasthenia gravis (MG) means making daily adjustments, and getting dressed is no exception. What used to be routine is now strategic. Every piece of clothing has to pass the test: Is it comfortable? Will it make my symptoms worse? Can I put it on without feeling exhausted? Over the past decade with MG, I’ve figured out what works for me: layers, easy-to-wear fabrics, and a steadfast refusal to wear anything that makes me miserable. Buttons and zippers are a thing of the past.
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1 month ago | 
myastheniagravisnews.com | Mark Harrington |Shawna Barnes |Sarah Bendiff
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 avascular necrosis, which causes severe, intense pain. Intravenous immunoglobulin therapy can be accompanied by debilitating headaches. Sometimes when the physical pain has passed, the psychological pain remains.
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1 month ago | 
myastheniagravisnews.com | Thomas Bartlett |Andrea Lobo |Margarida Maia |Shawna Barnes
As the result of his professional background working at companies such as Apple and Dell and a life sciences consulting firm, Thomas Bartlett found himself needing to make a difference in the world of myasthenia gravis (MG). He began by consulting for pharmaceutical companies in the MG space, and now he speaks about applied technologies to improve quality of life through real-time data acquisition and analysis.
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1 month ago | 
myastheniagravisnews.com | Shawna Barnes |Steve Bryson |Sarah Bendiff |Retha De Wet
I bought a car last week, and that’s not even the best part. My sales rep is the star of this show. I’d been looking at trading in my 2018 Dodge Grand Caravan for a few months. I loved that van for what it was. It helped us make the trek from Maine to Wisconsin. But it was time for something different. As with mobility aids, needs can change over time. I started looking at a local dealership in November.
