The Whispered Roar – a Column by Shawna Barnes

IVIG and Me: How Having a Port Has Improved My Treatments

One common treatment for myasthenia gravis (MG) is intravenous immunoglobulin (IVIG). I was initially treated with IVIG for my symptom flares and exacerbations. Thanks to detailed notes kept by my infusion nurses at the Veterans Affairs (VA) clinic in Maine, where I received those infusions, and because of…

My Dinner Plate Theory Helps Explain Daily Energy Levels

“Stick a fork in me, I’m done!” “I don’t have enough spoons for this.” We’ve all heard various quips involving silverware. When one becomes part of the chronic illness family, they may adopt the term “spoonie,” based on the spoon theory, a metaphor coined by lupus patient Christine Miserandino. Essentially,…

A New Home Base Despite an Old Set of Woes

We made it! Seven states, 35 hours, and five weather types later, we arrived at our destination. Moving cross-country is not for the faint of heart, but with a little planning and a level head when problems crop up, it’s doable. Our home sale in Maine had some hiccups…

Here’s to Breathing Easier, Eventually

LOL. Some days all you can do is laugh out loud. In January I got very sick with COVID-19. As I mentioned in a February column, it took a lot out of me, but at the time I was slowly beginning to recover. It’s now the end of March,…

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…

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.