Columns

The Importance of Being Mindful During COVID-19

The cold surface felt good on my cheek. I turned my head to the other side, looking for fresh coolness for my other cheek. Slowly, I realized the cool feeling wasn’t coming from a soft, fresh pillowcase. I was facedown on the hardwood floor. “Why am I sleeping on my…

Inconclusive Does Not Mean Nothing Is Wrong

While Rare Disease Day events spanned the globe, I came across paperwork that reminded me of how difficult it was to have my Lambert-Eaton myasthenic syndrome (LEMS) diagnosed. For close to a decade, I had occasional numbness on my face. The muscles in my back were in constant spasm,…

Reflecting on My First Month on Hizentra

I have completed my first month on Hizentra (immune globulin), and I am ready to share my experience. (It’s important to note that I am not sponsored, paid, or endorsed as a product ambassador. This column is based on my experiences with Hizentra — other people may have…

An Ultra-rare Disease Has Led to an Ultra-rare Friendship

I don’t think there is a rare disease patient on the planet who doesn’t harbor some hurt deep in their soul about how friendships change after a diagnosis. These changes were especially difficult for me. I was diagnosed as an adult, and my entire career was centered on people through…

Winning at BioNews Services

Those of you who follow my Instagram or Facebook pages may have noticed that I was in Philadelphia last week. It was my first time actually leaving the city’s airport, which I have flown in and out of at least a dozen times in my lifetime. This trip…

What a Difference a Decade Can Make

It’s a new year and the beginning of a new decade. Photos have been popping up all over social media, showing how people looked 10 years ago versus now. Many are sharing their accomplishments over the last decade. When I first saw a friend’s list, I was a little taken…