Columns

Moving Forward Starts With Speaking Out

Normally, I don’t have a hard time talking about various subjects. I could spend hours discussing Academy Award nominees, arguing about why Slack is better than Microsoft Teams, or gossiping about the British monarchy. Speaking up isn’t the problem — it’s the subject matter that trips me up. When…

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…

After the Diagnosis, Is My Life Over?

A week or so after spending three days in the hospital, I found out I had myasthenia gravis (MG). My symptoms were raging. They included severe double vision, slurred speech, and extreme fatigue, and eating, chewing, and swallowing were next to impossible. All of it was terrifying. Getting up to…

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…

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.