Myasthenia Gravis News

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How I manage my image to live with myasthenia gravis

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?
How bulbar muscle weakness due to MG affects my voice

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.
The costs associated with my invisible disability

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.
Scientists develop assay to detect anti-agrin antibodies in MG

3 weeks ago | myastheniagravisnews.com | Marisa Wexler |Margarida Maia |Lindsey Shapiro |Vanda Pinto

Scientists in Korea have developed a cell-based test that can be used to detect antibodies against agrin, a protein involved in nerve-muscle communication that is sometimes targeted by harmful autoantibodies in people with myasthenia gravis (MG).
Coping with grief after losing members of my MG care team

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.
MGFA patient conference highlights wellness education, science

3 weeks ago | myastheniagravisnews.com | Marisa Wexler |Mark Harrington |Andrea Lobo |Margarida Maia

More than 500 members of the myasthenia gravis (MG) community are expected at a conference featuring strategies for patient education, advances in science and treatment, and discussions on managing MG.
My twin faces limited mobility, especially during heat waves

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.
Cooking can be a challenge with myasthenia gravis

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.
Life with an invisible illness can still be fun

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.
Batoclimab eases disease severity; Immunovant backs IMVT-1402

4 weeks ago | myastheniagravisnews.com | Lindsey Shapiro |Mark Harrington |Marisa Wexler |Margarida Maia

Investigational therapy batoclimab eased disease severity for adults with generalized myasthenia gravis (gMG) in a Phase 3 trial, but the treatment’s developer said it’s not planning to seek regulatory approval of the treatment for gMG in the U.S. Immunovant, a Roivant subsidiary, is instead focused on using the findings to further advance its lead therapeutic candidate, IMVT-1402, which has a similar mechanism of action to batoclimab — both belong to a class of therapies called FcRn...