The Whispered Roar – a Column by Shawna Barnes

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…

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…