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1 week ago | 
myastheniagravisnews.com | Sarah Bendiff |Mark Harrington |Allen Francis
I recently made peace with the fact that we almost always judge the book by its cover. It’s just what humans do. We believe what we see. And having a disease that’s not always visible has been the biggest challenge of my life. I often look just tired enough to not be trusted with a full-time, high-pressure job, but not sick enough to be accepted in priority lines without getting questioned. I know I’m not alone in that, so it got me thinking: Can we control our appearance to make our lives easier?
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2 weeks ago | 
myastheniagravisnews.com | Sarah Bendiff |Patricia Inacio |Mark Harrington |Andrea Lobo
By the end of each month, I always find myself asking: Where does my money go? I work as a freelancer in the digital marketing field, and I also teach courses in the same area. It’s a pretty lucrative activity these days, especially as digital work continues to expand. But somehow, this income is never enough. And the answer to my opening question is always the same: myasthenia gravis (MG). I hate feeling like I’m victimizing myself or constantly blaming MG.
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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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4 weeks ago | 
myastheniagravisnews.com | Mark Harrington |Sarah Bendiff
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. Instead, I want to share the joy and humor I find in days made difficult by MG.
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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 | 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.
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1 month ago | 
myastheniagravisnews.com | Sarah Bendiff |Marisa Wexler |Mark Harrington
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 that once they gave my condition a name, I’d finally have answers and a treatment plan. My problems would magically (or chemically, I should say!) disappear. But reality turned out to be different.
