Columns

Every year since my Lambert-Eaton myasthenic syndrome (LEMS) diagnosis in 2016 has brought unexpected experiences. In the past year, my eyes have been opened to the amazing resilience of the mothers of rare disease patients. One mother I am blessed to have become friends with is Lori Dunham, also…

When I was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) in 2016, I quickly learned that I would need to educate everyone else about my ultra-rare disease. The need to educate people about LEMS is why I started writing. Last month, I fell and suffered a concussion. Looking back, I…

It seems that one can’t turn on the news, scroll through Twitter, or read Facebook these days without seeing a reference to  the antimalarial drug hydroxychloroquine and what it might do for patients with COVID-19. So, it’s important for me to share the story of how hydroxychloroquine changed my…

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…

I’ve never struggled more with writing a column. How does one write a column for Lambert-Eaton myasthenic syndrome patients who are part of the high-risk category during the COVID-19 pandemic? My normal writing schedule was useless last week. If I had written my first draft and let it sit before…

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…