This was a very sad week for me. I learned that my amazing rheumatologist, Dr. Asha Shrestha, is moving. I saw her a couple of days ago for the last time. As she injected my severely inflamed finger joints with cortisone, we talked about life as if we’d never see…
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,…
As I look forward to Rare Disease Day, it is not lost on me that five short years ago I hadn’t heard of it. When my first LEMS friend, Lisa Rountree, mentioned Rare Disease Day to me, I asked: “What’s that?” From left, columnist Dawn DeBois…
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…
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…
People often comment that there aren’t enough days in the week or hours in the day. But I’ve found myself looking at a dozen more days in my month! How am I finding 12 extra days in a month? It’s simple: I have changed how my body receives immunoglobulin G…
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…
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…
This has been a year of firsts for Lambert-Eaton myasthenic syndrome (LEMS) patients. Two medications approved by the U.S. Food and Drug Administration became commercially available for patients. It is nearly unheard of to have approvals for a single rare disease within months of each other. Patients now…
When I published my first blog post for “The Battle Within,” I was thrilled to receive a comment from a woman in Dallas named Betty Ann Lasley. Not only did Betty Ann become a fan of my blog, she became a very dear friend of mine. At my first…
Get regular updates to your inbox.