Author Archives: Shawna Barnes

How Can Hospitals Better Serve Rare Disease Communities?

“It’s just anxiety.” “It’s just stress or PTSD.” “You just need more rest.” For many of us in the rare disease community, these comments aren’t uncommon. As someone with seronegative myasthenia gravis (MG), I hear them almost every time I go to the emergency room. I experience bulbar…

My Quest to Name the Beast That Is MG

With a prevalence of 14-40 cases per 100,000 people in the U.S., myasthenia gravis (MG) is considered a rare disease. Plus, early-onset MG can mimic other diseases like multiple sclerosis, amyotrophic lateral sclerosis, and others. If a patient is one of the “lucky” ones who has autoantibodies indicative of…

‘Let’s Talk About Sex, Baby’

“Let’s talk about sex, baby/ Let’s talk about you and me/ Let’s talk about all the good things/ And the bad things that may be.” Am I aging myself by referencing a Salt-N-Pepa song? Maybe. But I think the topic of sex is important to discuss. Yet it often…

Accepting Help and Receiving Kindness

I wrote last week about how the inaction and silence of others can be deafening. The opposite is also true. When help is offered and the offer is followed up on, it can leave you speechless, humbled, and grateful. And those who step up to help often are not…

Setting Realistic Goals and Expectations With MG

Many of my friends, colleagues, and family members set goals for the year in January. Goals can be personal or professional, interpersonal or financial, realistic or not. What makes a goal realistic, particularly for someone with myasthenia gravis (MG)? It’s a tough question to answer, but I’ll do my best.

When a Subtle Voice Becomes a Roar

Welcome to “The Whispered Roar,” a column where I will describe what it’s like living with a neuromuscular autoimmune disease called myasthenia gravis (MG). I was officially diagnosed with generalized MG in 2018, although I had been battling symptoms since 2011. My journey to diagnosis is not an uncommon…

2021 Myasthenia Gravis Survey Results

BioNews Survey Infographic

Myasthenia Gravis News conducted a survey from Feb. 11-March 28 to gain greater insight into the characteristics of the MG community and disease management. Results of the survey have now been published. Click on the image to view the infographic, and click here to read the story.