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New Forums Are a First for LEMS Patients

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…

Thankful for You, My Readers

When I checked into my last day of immunoglobulin therapy last week, I sat next to another patient in the waiting area. She looked over at me and said: “I’ve read all of your blog articles. It’s nice to have them, because you really do understand what we go…

I’ve Got the Fire in My Soul

Spontaneity is what I miss most about my pre-LEMS life. No longer can I hop in the car and go to a concert, the beach, or a quick weekend away without planning around meds and treatment schedules. Even with the best-laid plans, I find myself pulling over to make sure…

Putting My Fear of Needles to the Test

I used to pass out at the sight of blood. As a toddler, I saw the blood from my mother’s suicide attempt. The images from that night will forever be 10-second flashbacks in my brain. Fainting was my body’s way of protecting myself from more trauma. As I grew older,…

I’m Fortunate to Be the ‘Right Talent, Right Now’

Did you know that October is “National Disability Employment Awareness Month“? I hadn’t realized it until midmonth, though I’m legally disabled and employed as a writer. This year’s theme, “The Right Talent, Right Now,” jumped out at me as thoughts swirled in my head about having a month dedicated…

IVIG Is a Key to My Success with LEMS

We’ve all been there. Our doctors suggest a new treatment for our rare disease, and after consulting with other patients through social media, we decide that the option is too scary. I did this with intravenous immunoglobulin (IVIG) replacement therapy. For more than a year, I held my neurologist…